Turkish Journal of Oncology Turkish Society for Radiation Oncology
Article Open Access Volume 34 · Issue 1 · 2019 pp. 001–011

Determining Unmet Needs Among Breast Cancer Survivors - An Exploratory Sequential Mixed Methods Study

Emmanuel Joseph FONG1, Whye Lian CHEAH1, Hazmi HELMY1
1 Department of Community Medicine and Public Health, Malaysia Sarawak University (UNIMAS), Faculty of Medicine and Health Sciences, Kota Samarahan, Sarawak-Malaysia
Published: 2019 DOI: 10.5505/tjo.2018.1918 Article ID: 1043
PDF
Abstract
OBJECTIVE

This study characterized the unmet supportive care needs and factors contributing to unmet needs
among breast cancer survivors in Kuching, Sarawak.


METHODS

It was an exploratory sequential mixed methods study.


RESULTS

For qualitative exploration phase, 9 respondents were interviewed including survivors, healthcare
providers, and informal caregivers which revealed the need for additional category of "Practical, social,
and spiritual support", and was incorporated into the 34-item Supportive Care Needs Survey (SCNSSF34).
For quantitative phase, a total of 259 survivors participated. Regression analysis revealed shorter
duration of survivorship and younger age were significant factors contributing to greater overall unmet
needs. Other significant factors causing higher unmet needs include late stage (Stage III & IV) cancer,
undergoing active treatment, being employed, Malays and Sarawak indigenous groups, higher education
attainment, and age at diagnosis of less than 50. Being married was associated with higher needs in
the Sexuality domain but lower needs in the Physical and daily living domain.


CONCLUSION

Socio-demographic and medical characteristics of survivors were significant factors for unmet needs.
Targeted and systematic delivery of supportive care according to these factors is crucial to improve quality
of life and well-being of survivors.

Keywords: Breast cancer survivors; mixed methods study; unmet needs

Full text

Introduction

A diagnosis of cancer can alter a person"s perspective on health and eventually life itself [], as well as disrupts their psychological functioning.[] For the individual, life after cancer diagnosis is filled with the struggle to find meaning in life, regain control in activities of daily living, and adjust to reorientation of values and goals in life.[] It is a life-changing experience which is unique to the individual survivor but also carries some universal similarity, with uncertainties and consequences. Therefore, it is not surprising, the term Quality of Life (QOL) is often brought into the picture whenever one dwells into issue of cancer survivorship. It is no exception that breast cancer survivors experience multiple challenges across various domains in life, and these challenges are perceived as needs. To address these issues, researchers have developed and proposed the use of needs assessment which has the advantage of looking into issues of both quality of life and care, and allows for identification of area of need and its magnitude.[] Furthermore, recent study revealed that breast cancer survivors actually reported greater amount of unmet needs on average in comparison to other cancer survivors.[] As they are a growing community of breast cancer survivors worldwide, understanding their unmet needs remain a priority area of concern. Failure to identify and address unmet needs have multiple negative repercussions in various domains of the survivors" life, including emotional burden, inability for self-care, incapacitated work and social functioning, which then may further worsen the debility left by the primary cancer in a life-long manner.[] Despite the comprehensive cancer care program which the Malaysian government have prepared via its publicly funded hospitals, recent studies have shown that unmet needs among cancer survivors still prevail with a prevalence of about 30-40% [] meanwhile local studies revealed a prevalence of unmet needs between 14.9% to 34.7%. [] In addition to that, the relatively higher late stage breast cancers among Malaysian women compared to developed nations [] is an area of concern as the stage at time of presentation is a crucial prognostic factor among breast cancer survivors [,], and has a direct effect on their subsequent needs and consumption of healthcare resources within the cancer care continuum. Therefore, identification of factors that contribute to unmet needs is crucial in bridging the service delivery gap and improve client satisfaction. The purpose of this study is to determine the factors contributing to unmet supportive care needs among breast cancer survivors by means of mixed methods research. The objective of the qualitative method was to explore via qualitative inquiry the factors that contribute to unmet supportive care needs, and followed by the quantitative method to determine the factors (socio-demographic, and medical characteristics) that contribute to unmet needs among breast cancer survivors.

Methods

This was a mixed methods cross-sectional study with the exploratory sequential design approach of the mixed methods study, involving three phases in consecutive sequence: Phase I - was the exploration of factors contributing to unmet needs among breast cancer survivors via qualitative data collection; Phase II - involved the development and validation of questionnaire, and pilot study; and Phase III - was the application of the instrument which provided greater insight into the factors contributing to unmet needs among larger population of breast cancer survivors.

The use of mixed methods research in this study was to seek a clearer understanding of the factors which contributed to unmet needs among breast cancer patients. It recognized the diversity of the Malaysian population, its ethnic and cultural background, and aims to better contextualize instruments that measure their unmet needs.

The study was conducted at the Breast cancer clinic, Surgical Outpatient Department (SOPD) of the Sarawak General Hospital (SGH), Kuching, Sarawak. Being Sarawak state"s tertiary center, SGH served as the state referral center, and therefore had good catchment of breast cancer cases diagnosed within the state at an approximate 150-170 cases per year.[]

The inclusion criteria employed in qualitative component of the study included: (a) Malaysian adult females aged 18 years and above, who had a diagnosis of breast cancer (all stages), and was physically and mentally capable to participate in the study; or (b) Healthcare providers who were in the direct provision of care to breast cancer patients in the clinic and have worked in the unit for at least six months" duration prior to the recruitment, eg. doctor, and nurse; or (c) Caregivers (informal) who have been in direct care of the survivors for at least six months" duration, eg. husband, or immediate family members.

For quantitative component of the study, the inclusion criteria were breast cancer survivors who fulfilled the criteria of: (a) Malaysian adult females aged 18 years and above; (b) Diagnosed with breast cancer (all stages); and (c) Physically and mentally capable to participate in the study. Non-Malaysians were excluded in this study.

Purposive sampling was conducted during the Qualitative exploration of the research. The sampling size for this phase was considered adequate when data saturation was achieved and no new themes emerged. For the quantitative component of the study, the Supportive Care Framework by Fitch [] recognizes that about 20% of cancer patients within the healthcare system has unmet needs. Therefore, in order to estimate the 20% prevalence of unmet supportive care needs with a confidence interval of 95% and a 5% margin of error, an estimated sample size of 246 was required as per the equation of, n=(z2 pq)/(d2) where z=1.96, p=0.2, q=1-p, and d=0.05.[] By factoring in attrition rate of 5%, a total of 259 respondents was required and recruited in this study.

During the qualitative exploration of this study, an indepth face-to-face interview using semi-structured protocol was conducted within a conducive environment and the responses were recorded in both textual and audio format. Respondents were encouraged to express themselves and further clarification on certain points were sought during the interview. Inquiry into the past experiences of survivors during qualitative exploration was done with tact and empathy so that any resurface of past traumatic experience or discomfort would be kept to a minimum. Participants were encouraged to disclose as much as they were comfortable with, or if they so wish, a subsequent interview was scheduled and conducted to complete the interview. Upon completion of the interview session, the debriefing and words of thanks was given to each respondent. The audio files were then transferred into the computer for re-play and transcribing. The transcribed data files were then loaded into QDA Miner 4 Lite software for analysis. Upon complete transcribing of the audio files into textual format with counter checks done, the audio files were deleted from both the Dictaphone and computer.

The quantitative phase of this study was conducted solely among breast cancer survivors. Informed and written consent were obtained from survivors who attended their follow-ups at the Breast Cancer Clinic. The respondents were selected via simple random sampling of survivors who were scheduled on the clinic day, after having arranged the clinic card in alphabetical order. The questionnaire was administered via interview assisted survey method whereby respondents were asked, based on the questionnaire, and their response recorded on a one-on-one basis. This approach ensured better response rate, provided the opportunity to clarify any queries on the spot, and therefore eliminate the risk of missing data or incomplete response. Furthermore, data collection was done while the respondents were waiting for their turn to be seen, thus ensuring efficiency by minimizing loss in terms of physical effort and time. The collected responses were again checked for completeness of information on the spot and subsequently transferred into the SPSS program for statistical analysis.

Qualitative data collection involved the use of semi-structured interview protocol (refer Appendix 1) with the aim to explore the factors contributing to unmet needs among breast cancer survivors. This approach enabled the direct assessment of the perception of breast cancer survivors themselves and through the perception of informal caregivers and healthcare providers of what they think the survivors" needs during their care. The interview protocol was formulated after reviewing barrier framework currently in use [] as well as articles which discusses factors of delayed presentation and barriers to follow-up among breast cancer patients.[,]

Quantitative data collection involved the collection of socio-medico-demographic characteristics of the respondents and their unmet supportive care needs. In Part I, items generated from Phase I of qualitative exploration was used and incorporated in the assessment of unmet needs by using the Supportive Care Needs Survey Short Form 34-item (SCNS SF-34).[] The SCNS-SF34 which was developed by Boyes and colleagues [] has the ability to assess perceived needs, which are cancer-specific, covering five domains: psychological (10 items), health system and information (11 items), patient care and support (5 items), physical and daily living (5 items), and sexuality (3 items). [] In this study, respondents indicate their level of need for help within the past one month as a result of having cancer on a five-point Likert scale whereby: 1= no need, not applicable, 2= no need, satisfied, 3= low need, 4= moderate need, and 5= high need. The domain mean score was obtained by summing up the responses to each of the items within the domain and dividing the sum by the number of items in the domain. A higher score (maximum 5.00, and minimum 1.00) would indicate higher perceived need in that domain.

The Part II of the questionnaire includes medical characteristics of respondents, duration in years and months since first diagnosis of breast cancer, cancer stage at time of diagnosis, and current treatment status of the survivor. Meanwhile Part III of the instrument relates to socio-demographic characteristics which include age in years, ethnicity, religion, marital status, cohabitation status, formal education, and employment status.

A pilot study of the modified questionnaire which incorporated items generated from Phase I of the study was conducted among 30 breast cancer survivors. Feedbacks on level of acceptance of the survey, time taken to complete, and other arising issues were obtained from the respondents.

For qualitative data analysis, thematic analysis was conducted via the use of QDA Miner 4 Lite software. A 6-step approach in thematic analysis was employed in this study based on Virginia Braun & Clarke.[18]

Statistical analysis for quantitative data was carried out using the IBM SPSS Statistics program version 22 (SPSS Inc.; Chicago, IL, USA). All test of significance with p-value of less than 0.05 was accepted as the cut off and deemed statistically significant.

This study was conducted with the approval from the Medical Ethics Committee, Faculty of Medicine and Health Sciences, Universiti Malaysia Sarawak (UNIMAS), the Medical Research and Ethics Committee (MREC), National Institute of Health (NIH), Ministry of Health (MOH) Malaysia and the approval of the hospital director of the Sarawak General Hospital.

Results

Qualitative Component:
A total of 9 participants recruited for the qualitative research component. Details on the participants are presented in Table 1.

Table 1: Summary profile of interviewed participants (n=9)

Table 2 illustrated the qualitative analysis of three groups of respondents, survivors, healthcare provider and informal caregiver as well as the data derived 13 categories. A comparison of the qualitative findings in Phase I with the existing SCNS-SF34 was performed. There were items within the existing SCNS-SF34 which were supported by the qualitative findings while 11 items were recommended to be included to supplement the existing questionnaire. The newly generated 11-items were considered to be unique and with domain of its own, as it was founded upon and justified by the established theoretical knowledge from the Supportive Care Framework.[] They were further classified as "Practical, Social, and Spiritual Support" domain. A pilot study of the modified questionnaire was carried out among 30 respondents and the result of the reliability analysis is presented in Table 3.

Table 2: Categories and codes as indicated by participant groups (n=9)

Table 3: Reliability analysis of domains

Quantitative Component:
The socio-demographic characteristics of all the respondents in this study were analyzed and tabulated in Table 4.

Table 4: Socio-demographic and Medical characteristics of respondents (n=259)

To determine the association between independent and dependent variable, inferential statistics using univariate and multivariate analyses were used. Variables with p value<0.20 in univariate analyses were selected for multiple linear regression. Overall, age of respondents and their duration of survivorship were significant factors contributing to unmet needs among breast cancer survivors. These two factors were also found to be important determinants across majority of the domains (Table 5). In terms of domains with the greatest number of contributory factors, the sexuality domain was reported with the most factors which affect the unmet needs and include marital status, race, age at diagnosis, and education level. The summary table of significant contributory factors by domains were as depicted in Table 5.

Table 5: Summary table of significant contributory factors by domains (n=259)

Discussion

Generally, the survivors who participated in this study were less than 60 years old, with a mean age of 56.2(SD=10.29), mainly Chinese, practices religion, married, stays with others, had secondary or tertiary education, and were unemployed. The predominance of having more survivors being less than 60 years old corresponds to other studies conducted within Malaysia [], as well as recent study conducted among breast cancer survivors from a community-based support group within Kuching, Sarawak.[] The ethnic composition in this study was in congruent with studies involving over 4000 databases of Malaysian and Singaporean survivors [], as well as study conducted within Sarawak [] in which majority of survivors were Chinese. Meanwhile, the marital status and employment status were in congruent with studies conducted within Malaysia, that is majority were married [,], and unemployed.[,] In comparison with recent local studies among survivors from a community-based support group, the parameters for practice of religion, cohabitation status, and education level were similar. []

This study revealed that the mean age at diagnosis for breast cancer among survivors were 51.2(SD=10.33) years, with majority of them being diagnosed at the age of 50 and older, have a mean duration of survivorship of 5.1(SD=4.77) years whereby majority were surviving up to five years, presented with early stage (Stage I and II), and were undergoing active treatment. The mean age at diagnosis in this study was in close agreement with a retrospective cohort study of breast cancer registry and medical records of a major tertiary public hospital whereby the mean age reported was 51.6(SD=11.54).[] A recent review of breast cancer research in Malaysia reported that on average, Malaysian women presented at an earlier age compared to their Western counterparts, citing two main factors which led to such observation: (i) Malaysia have a younger population demographic, and (ii) current older population in Malaysia have lower-risk lifestyle factors which led to lesser post-menopausal breast cancer risk.[]

On average, the mean duration of survivorship in this study (5.1 years) was longer than data reported from another tertiary center in the country (5.1 vs. 4.5 years) [], while it appeared shorter in survival duration when compared against data reported from a university hospital in the country (5.1 vs. 6.7 years) [] and amongst community-based support group survivors (5.1 vs. 8.2 years) []. This variation in survival duration can be attributed to the differences in having more later stage cases recruited from hospital records in tertiary centers [] which led to shorter survival duration on average. On the other hand, longer survival duration reported from the university hospital [] and the community-based support group [7] as compared to the current study could be due to the fact that there were more early stage cancer survivors recruited in those two centers. In terms of cancer stage at time of diagnosis, the current study findings of having more early stage (Stage I and II) reported were in congruent with various local studies.[,] In tandem with having majority of survivors with survival duration of up to five years, the number of survivors undergoing active treatment in this study is by no surprise the majority of the group. This is in contrast with local studies whereby majority of survivors recruited from community-based support group were survivors of more than five-years duration which corresponded with most of them not undergoing any active treatment. []

This study revealed that both the duration of survivorship and age of respondents were strong factors contributing to overall unmet needs among breast cancer survivors. Younger survivors (duration of survivorship up to five years) and younger respondents (age below 60 years old) were factors associated with higher unmet needs on the whole. Systematic review of factors associated with supportive care needs of women with breast cancer concurred with the current finding, whereby shorter time since diagnosis and younger age were systematically identified as factors contributing to higher levels of needs.[] Younger survivors (duration of survivorship up to five years) are considered to be within the distinct survival period of "acute survival" as postulated by Mullan.[] The acute survival stage has been regarded as the period from the time of diagnosis of illness which is often occupied by diagnostic and therapeutic efforts, which causes fear and anxieties in the person.[] Furthermore, newly diagnosed cancer patients had greater physical and emotional needs compared to those already receiving post-treatment follow-up care.[] Meanwhile, younger respondents being associated with higher needs as compared to older respondents could be a reflection of differences in attitudes between younger adults who are more vocal about their unmet needs than older adults who believe they should have better coping capacity and therefore keep things to themselves.[]

In the Physical and Daily Living domain, regression analysis revealed that duration of survivorship, cancer stage, and marital status were significant contributory factors to unmet needs in this domain with medium effect. Younger survivors (duration of survivorship up to five years) were associated with higher level of needs within this domain and is in congruence with recent systematic review of contributory factors of supportive care needs among breast cancer patients.[] This predisposition of greater needs in this domain among younger survivors were established by studies among women with breast cancer.[,] From a temporal standpoint, younger survivors of up to five-year duration of survivorship could fall into the "extended survival" period of cancer survivorship, which is a period when physical limitations are apparent due to the effects of cancer itself and the treatment modalities. [] These survivors are faced with the prospect of permanent complications such as loss of body image, arm mobility, and lymphedemas [] and had to deal with it at home, community, or the workplace. Cancer stage was a significant factor in this domain, with later stage (Stage III & IV) survivors associated with higher Physical and Daily Living domain needs. Advanced stage of disease was systematically found to be associated with greater needs in the Physical and Daily Living domain. [] Advanced stage diseases often entail aggressive and extensive treatment approach, including destructive surgical procedures and intense systemic therapies or radiation, which then give rise to various permanent complications and unmet needs reflected by later stage survivors in this domain. Marital status was found to be strong contributory factor of unmet needs in this domain with those being married associated with lower unmet needs. Indirectly, it concurs with the systematic review of factors contributing to unmet needs whereby "being single" was found to be associated with greater needs in the Physical and Daily Living domain [], as well as study of unmet needs among breast cancer patients in Denmark who reported higher unmet needs for "not having a partner".[] Additionally, studies have found that married patients may suffer less impact from stressful life events [], therefore, it is possible that being married have a positive effect which led to lower reported needs on items in the domain such as items Pain, Lack of energy/ tiredness, Feeling unwell a lot of the time, Work around the home, and Not being able to do the things you used to do. It is also likely that being married would see that survivors receive social support in the form of their partners which lowers their need for help or enable them to identify and access health services.[]

Within the Health System and Information domain, regression analysis yielded treatment status and age of respondents as significant contributory factors with small effect. In the current analysis, younger age (below 60 years) and being under active treatment was associated with higher needs within the domain. The fact that younger survivors associate with higher needs have been systematically established [], and attributed to variations in attitudes whereby younger adults would make their unmet needs known compared to older adults who kept things to themselves, believing that they should have better coping capacity.[] Meanwhile, current finding of being under active treatment associated with higher needs, is consistent with studies which revealed that among general cancer patients, being under active treatment is associated with higher unmet needs [], or locally among survivors from a community-based support group [], while in contrast, those in remission reported fewer unmet needs in the information domain.[] This could reflect the higher likelihood of unmet information need among those undergoing active treatment due to increased encounter with the healthcare system and utilization of its services.

Greater unmet needs within the Psychological domain was contributed by age of respondents and duration of survivorship, whereby regression analysis revealed that younger respondents and younger survivors associated with higher unmet needs with small to medium effect within this domain. This finding is in agreement with a review which systematically found that both younger age and shorter time since diagnosis contributed to greater need within the Psychological domain.[] Meanwhile, local study among community-based support group breast cancer survivors also yielded similar association of younger age and survivorship with higher psychological needs.[] Such observation of younger respondents and younger survivors having greater unmet needs within the Psychological domain is neither surprising nor alarming as they find themselves to be within the "acute survival" stage in which psychological stress remained a constant element in that phase.[] Furthermore, it has been established that cancer diagnosis disrupts the psychological functioning of a person, and is a dynamic process of constantly balancing the stress and burden of cancer experience with the resources available to cope.[]

The current study revealed that duration of survivorship was a significant contributory factor of unmet needs within the Patient Care and Support domain with small effect. The model showed that younger survivors would have greater needs within the domain. This finding is consistent with findings from other studies.[,] Younger survivors, who in their course of cancer care, would have more frequent encounter with the healthcare providers and consume more healthcare services during the early stages of their care, and being in "acute survival" stage would predispose them to greater anxiety in coping with the new reality.[] These episodes of contact could give rise to indication of need among items included in the domain such as items More choices about which cancer specialists you see, Reassurance by medical staff that the way you feel is normal, or Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs. This higher emotional needs among younger cancer survivors compared to those already receiving posttreatment follow-up care has been demonstrated.[] Additionally, emotional distress among younger survivors in response to cancer diagnosis has been established as an expected reaction and will be experienced by all cancer patients to a certain degree.[]

Within the Practical, Social and Spiritual support domain, employment status, duration of survivorship, and age of respondents were significant contributory factors of unmet needs. Regression analysis showed being employed, younger age, and younger survivor were associated with greater needs in the domain with medium effect size. Being employed associated with greater needs in this domain makes intuitive sense. The current domain included the category relevant to Practical needs as proposed in the Supportive Care Framework for Cancer Care [] and includes items such as Getting employed or staying at work, and Getting the support of your employer or supervisor which could be rated as high need amongst survivors who are employed. Additionally, younger survivors and being age below 60 in this study were factors that contributed to greater needs within the domain. Univariate analysis revealed that both factors contributed to significantly higher domain means score. This is a reflection of increased need in items relevant to the Spiritual and Social category of Supportive Care Framework for Cancer Care [] which was included within this domain. Spiritual category items such as Feelings of hurt and helplessness suggests issue relevant to existential despair in which newly diagnosed patients questions the meaning of life and its value, while item Building spiritual strength or receiving spiritual support reflects the need to cope by means of spirituality. Spiritual well-being brings meaning to life and improves psychological challenges and physical problems [], it also reduces chronic pain, improves coping skills, and bring about higher quality of life.[] Clearly spirituality is not merely subjective feelings or meanings construed by the survivor, but rather have tangible benefits seen in other areas of life and survivorship. Meanwhile, Social category of the framework within the domain included Getting the support of your family or relatives, staying strong for your children or loved ones, and Getting help from support groups or friends and colleagues. Higher needs in this area as indicated by younger respondents (below 60 years old) most likely associated with the fact that they were still within the reproductive age and have younger families to take care of. A diagnosis of breast cancer among younger respondents could mean changes in roles, social relationships, or difficulty dealing with the responses of family members or children. [] Furthermore, altered social roles and limited social activities of breast cancer survivors due to cancer and its treatment could impair their long-term physical and emotional health.[]

The Sexuality domain in this study had the most number of significant contributory factors such as marital status, race, age at diagnosis, and education level (Table 5). The regression model revealed that being married as the greatest factor contributing to higher need in this domain, followed by Malays and Sarawak indigenous groups, being diagnosed at age less than 50, and having secondary and tertiary education with a large effect size noted. The findings concurred with systematic review by Fiszer and colleagues [] in which "living with partner" and "higher education" were associated with greater needs in the Sexuality domain. Furthermore, married patients in Korea were significantly more likely to indicate greater need in this domain [], as well as survivors from community-based support group.[] Such observation makes intuitive sense, given that married survivors have spouse or partner in whom they need to confront their sexuality needs and self-image more frequently. Higher education attainment was associated with greater needs among breast cancer survivors.[,] This is likely because these survivors are more aware and receptive of their underlying condition, which would have created a need in them to identify ways to overcome their current situation, any setbacks or barriers faced would be reflected as unmet needs. Moreover, younger age at time of diagnosis was associated with greater needs in the Sexuality domain because at the time of diagnosis, being younger age, they would still be sexually active and may have to deal with the changing physiology due to the physical impact of treatment and menopauseinducing cancer therapies. Furthermore, a greater sense of loss could be perceived by those diagnosed at younger age as compared to those diagnosed later. In terms of race as a contributory factor of unmet needs within the sexuality domain, Chinese were found to associate with lesser needs compared to Malays and Sarawak indigenous groups. Such observations were consistent with survivors from local community-based breast cancer support group [] in which Malays and Sarawak indigenous group reported significant higher mean score in the Sexuality domain compared to Chinese respondents. Such variation could highlight the differences in cultural background especially among the Asian Confucian-Chinese community, whereby personal problems or help-seeking reflects badly on the family and may bring shame to the family name, therefore it is better to keep private matters especially related to sexuality needs.[] However, not reporting needs does not mean the need does not exist [], rather it could also be some form of passive coping mechanism at play, such as "keeping busy, looking the other way, and not thinking too much".[]

This study recognizes potential presence of survey bias whereby not all breast cancer patients present themselves to the healthcare facilities. There will be those who never present themselves to the healthcare facilities due to various socio-cultural barriers, or preferred traditional treatment elsewhere [], or even those with preference for private healthcare facilities, therefore these subgroups of survivors would not be captured in the study.

On the other hand, critics might argue that the qualitative exploration component should only involve breast cancer survivors, as it was their needs and experience with which the study tried to elicit. However, this study maintains that by engaging healthcare providers and informal caregivers, the triangulation of sources could in fact provide a more holistic and complete view of the issue at hand, and in fact could be a strength of the study.

Conclusion

As a conclusion, the findings revealed factors contributing to higher unmet needs on the whole were younger age and shorter duration of survivorship. These contributory factors prevail across other domains as well. Other significant factors associated with higher unmet needs include late stage (Stage III & IV) cancer, undergoing active treatment, being employed, being Malays and Sarawak indigenous groups, higher education attainment, and age at diagnosis of less than 50 years old. Being married was associated with higher needs in the Sexuality domain but lower needs in the Physical and Daily Living domain.

The current study provided valuable insights into and served as baseline data of the characteristics and unmet supportive care needs of breast cancer survivors attending Breast Cancer Clinic follow-ups in Sarawak General Hospital, Kuching, Sarawak. There is a need for systematic delivery of supportive care which is patient- centered, targeted, culturally sensitive, responsive to changing needs, and linguistically appropriate especially to survivors who are younger and have shorter duration of survivorship. Furthermore, by identifying unmet needs and the associated contributory factors, healthcare planners would be able to allocate resources in an effective and efficient manner. Ultimately, the aim of addressing unmet supportive care needs of breast cancer survivors is to continuously improve the quality of life and well-being of these unique, expanding group of survivors who have a pivotal role in determining the health and well-being of the modern world.

Acknowledgement: The authors would like to thank the Director General of Health, Malaysia for the permission to publish this paper. Peer-review: Externally peer-reviewed.
Conflict of Interest: The authors declared that they have no competing interest.
Ethics Committee Approval: Medical Ethics Committee, Faculty of Medicine and Health Sciences, Universiti Malaysia Sarawak UNIMAS/NC-21.02/03-02 (62).

Financial Support: None.
Authorship contributions: Concept - E.J.F., W.L.C., H.H.; Design - E.J.F., W.L.C., H.H.; Supervision - W.L.C.; Materials - N/A; Data collection &/or processing - E.J.F.; Analysis and/or interpretation - E.J.F., W.L.C.; Literature search - E.J.F.; Writing - E.J.F., W.L.C.; Critical review - W.L.C., H.H.

References

Vachon, ML. The meaning of illness to a long-term survivor. Semin Oncol Nurs 2001;17(4):279-283. Andrykowski, MA, Lykins, Floyd, EA. Psychological Health in Cancer Survivors. Seminars in Oncology Nursing 2008;24(3):193-201. Hewitt M, Greenfield S, Stovall E. From Cancer Patient to Cancer Survivor: Lost in Transition. 1st ed. Washington D.C.:The National Academies Press; 2006. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A. Evaluation of an instrument to assess the needs of patients with cancer. Supportive Care Review Group. Cancer 2000;88(1):217-225. Burg MA, Adorno G, Lopez ED, Loerzel V, Stein K, Wallace C, Sharma DK. Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer 2015; 121(4): 623-630. Adler NE, Page A, Institute of Medicine (U.S.). Committee on Psychosocial Services to Cancer Patients/ Families in a Community Setting. Cancer care for the whole patient: meeting psychosocial health needs. Washington DC: National Academies Press; 2008. Fong EJ,. Cheah WL. Unmet Supportive Care Needs among Breast Cancer Survivors of Community-Based Support Group in Kuching, Sarawak. Int J Breast Cancer 2016; 7297813, doi:10.1155/2016/7297813. Yip CH, Taib NA, Mohamed I. Epidemiology of breast cancer in Malaysia. Asian Pac J Cancer Prev 2006;7(3):369-374. Campbell JB. Breast cancer-race, ethnicity, and survival: a literature review. Breast Cancer Res Treat 2002;74(2):187-192. Huang R, Huang Y, Tao P, Li H, Wang Q, Li H, Li JY. Evaluation of the quality of life in patients with breast cancer at different TNM stages after standardized treatment. Chinese Journal of Oncology 2013;35(1):71-77. Ooi CH, Mastulu W. Epidemiology of Cancer in Sarawak 2001-2005. Kuching: Sarawak Health Department; 2009. Fitch MI. Supportive care framework. Can Oncol Nurs J 2008;18(1):6-24. Daniel WW. Biostatistics : a foundation for analysis in the health sciences. Hoboken, NJ: John Wiley & Sons; 2005. Tejeda S, Darnell JS, Cho YI, Stolley MR, Markossian TW, Calhoun EA. Patient barriers to follow-up care for breast and cervical cancer abnormalities. J Womens Health (Larchmt) 2013;22(6):507-517. Peters K, Cotton A. Barriers to breast cancer screening in Australia: experiences of women with physical disabilities. J Clin Nurs 2015;24(3-4):563-572, 2015. Freitas AG, Weller M. Patient delays and system delays in breast cancer treatment in developed and developing countries. Cien Saude Colet 2015; 20(10):3177- 3189. Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients" perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). Journal of Evaluation in Clinical Practice 2009; 15(4):602-606. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006;3(2):77-101. Pathy NB, Yip CH, Taib NA, Hartman M, Saxena N, Iau P, Bulgiba AM, Lee SC, Lim SE, Wong JE, Verkooijen HM. Breast cancer in a multi-ethnic Asian setting: results from the Singapore-Malaysia hospital-based breast cancer registry. Breast 2011;20(2):S75-80. Edib Z, Kumarasamy V, Abdullah N, Rizal AM, Sami Abdo Radman Al-Dubai. Most prevalent unmet supportive care needs and quality of life of breast cancer patients in a tertiary hospital in Malaysia. Health Qual Life Outcomes 2016;14(26), doi:10.1186/s12955-016- 0428-4. Ibrahim NI, Dahlui M, Aina EN, Al-Sadat N. Who are the breast cancer survivors in Malaysia?. Asian Pac J Cancer Prev 2012;13(5):2213-2218. Al-Naggar RA, Isa ZM, Shah SA, Nor MI, Chen R, Ismail F, Al-Dubai SA. Eight year survival among breast cancer Malaysian women from University Kebangsaan Malaysia Medical Centre. Asian Pac J Cancer Prev 2009;10(6): 1075-1078. Fiszer C, Dolbeault S, Sultan S, Brédart A. Prevalence, intensity, and predictors of the supportive care needs of women diagnosed with breast cancer: a systematic review. Psychooncology 2014;23(4):361-374. Mullan F. Seasons of Survival: Reflections of a Physician with Cancer. New England Journal of Medicine 1985;313(4):270-273. Whelan TJ, Mohide EA, Willan AR, Arnold A, Tew M, Sellick S, Gafni A, Levine MN. The supportive care needs of newly diagnosed cancer patients attending a regional cancer center. Cancer 1997;80(8):1518-1524. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer 2000;88(1):226-237. Liao MN, Chen SC, Lin YC, Lin YC, Hsu YH, Hung HC, Wang CH, Chen MF, Jane SW. Changes and predictors of unmet supportive care needs in Taiwanese women with newly diagnosed breast cancer. Oncol Nurs Forum 2012;39(5):E380-389. Park JH, Chun M,. Jung YS, Jung YM. Changes of Supportive Care Needs and Quality of Life in Patients with Breast Cancer. Asian Oncol Nurs 2016;16(4): 217-225. Ganz PA, Yip CH, Gralow JR, Distelhorst SR, Albain KS, Andersen BL, Bevilacqua JL, de Azambuja E, El Saghir NS, Kaur R, McTiernan A, Partridge AH, Rowland JH, Singh-Carlson S, Vargo MM, Thompson B, Anderson BO. Supportive care after curative treatment for breast cancer (survivorship care): resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast 2013;22(5):606-615. von Heymann-Horan AB, Dalton SO, Dziekanska A, Christensen J, Andersen I, Mertz BG, Olsen MH, Johansen C, Bidstrup PE. Unmet needs of women with breast cancer during and after primary treatment: a prospective study in Denmark. Acta Oncol 2013;52(2):382-390. Burman B, Margolin G. Analysis of the association between marital relationships and health problems: an interactional perspective. Psychol Bull 1992;112(1):39-63. Gourash N. Help-seeking: a review of the literature. Am J Community Psychol 1978;6(5):413-423. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 2009;17(8):1117-1128. Akechi T, Okuyama T, Endo C, Sagawa R, Uchida M, Nakaguchi T, Akazawa T, Yamashita H, Toyama T, Furukawa TA. Patient's perceived need and psychological distress and/or quality of life in ambulatory breast cancer patients in Japan. Psychooncology 2011; 20(5):497-505. Wei D, Liu XY, Chen YY, Zhou X, Hu HP. Effectiveness of Physical, Psychological, Social, and Spiritual Intervention in Breast Cancer Survivors: An Integrative Review. Asia-Pacific Journal of Oncology Nursing 2016;3(3):226-232. Carlson LE, Speca M, Patel KD, Goodey E. Mindfulness- based stress reduction in relation to quality of life, mood, symptoms of stress and levels of cortisol, dehydroepiandrosterone sulfate (DHEAS) and melatonin in breast and prostate cancer outpatients. Psychoneuroendocrinology 2004;29(4):448-474. Hwang SY, Park BW. The perceived care needs of breast cancer patients in Korea. Yonsei Med J 2006;47(4):524- 533. Lam WW, Au AH, Wong JH, Lehmann C, Koch U, Fielding R, Mehnert A. Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat 2011;130(2):531-541. McLaughlin LA, Braun KL. Asian and Pacific Islander cultural values: considerations for health care decision making. Health Soc Work 1998;23(2):116-126. Huang K. Chinese Americans In Mokuau N. (Ed.), Handbook of social services for Asians and Pacific Islanders, 79-96. Westport CT; Greenwood Press: 1991. Parsa P, Kandiah M, Abdul Rahman H, Zulkefli NM. Barriers for breast cancer screening among Asian women: a mini literature review. Asian Pac J Cancer Prev 2006;7(4):509-514.s
Previous article Next article

Article information

5,536 Views
1,499 Downloads
View / Download PDF

Current Issue Vol 34 · Iss 1

Turkish Journal of Oncology – Issue cover
Submit manuscript
Most read & early access
Click an article to open abstract.
No early access articles.
View all articles