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  Table of Contents  
Year : 2014  |  Volume : 51  |  Issue : 3  |  Page : 262-266

Information and rehabilitation needs of Indian breast cancer patients: Report of a cross-sectional study

1 Department of Surgery, University College of Medical Sciences and GTB Hospital University of Delhi, India
2 Director, Delhi State Cancer Institute, Dilshad Garden, Delhi, India

Date of Web Publication10-Dec-2014

Correspondence Address:
N Kaur
Department of Surgery, University College of Medical Sciences and GTB Hospital University of Delhi
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/0019-509X.146768

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 » Abstract 

Background: Breast cancer causes significant disruption to the quality of life (QOL) of its patients, which is compounded further by lack of information and adequate facilities for rehabilitation. Materials and Methods: This descriptive cross-sectional study was conducted in women who had completed their Primary treatment of breast cancer. The QOL was assessed by Functional assessment of cancer therapy-breast (FACT-B) version 4, and information and rehabilitation needs were enquired about in a semi-structured interview. Results: A total of 154 patients were enrolled and divided into three groups according to the time elapsed after initial treatment; Group I: 1-2 years, Group II: 2-5 years, Group III: >5 years The FACT-B mean scores were; Group I (n = 64): 79.06 ± 14.60; Group II (n = 48): 85.75 ± 20.15; and Group III (n = 42): 89.83 ± 12.80. Patients in Group I scored lowest on physical well-being subscale, Group II on breast specific subscale and Group III on Social well-being subscale. Pain, lack of energy, inability to meet the needs of the family, fear that the condition will get worse and loss of body image were significant factors contributing to poor QOL. Analysis of interviewshowed many unmet information needs. Main rehabilitation needs were effective treatment of physical symptoms and counselling about body image issues and sexual dysfunctions. Easy availability of clinical and social support services were major felt needs in the long-term follow-up. Conclusions: Targeted Interventions are needed to address issues relating to QOL and rehabilitation needs of breast cancer patients.

Keywords: Breast cancer, functional assessment of cancer therapy-breast, quality of life

How to cite this article:
Kaur N, Miglani R, Grover R K. Information and rehabilitation needs of Indian breast cancer patients: Report of a cross-sectional study. Indian J Cancer 2014;51:262-6

How to cite this URL:
Kaur N, Miglani R, Grover R K. Information and rehabilitation needs of Indian breast cancer patients: Report of a cross-sectional study. Indian J Cancer [serial online] 2014 [cited 2019 Sep 18];51:262-6. Available from:

 » Introduction Top

An increasing number of patients are surviving breast cancer today, as a result of earlier detection and advancement in treatment. [1],[2] It is important, therefore, that patient care should not focus solely on the immediate effects of treatment, disease free intervals and survival rates. Another important aspect in this context is a differentiated knowledge of the long-term perspective regarding levels of effective functioning and subjective well-being.A key issue in this context is the patient's quality of life (QOL).

There is enough evidence which shows that though breast cancer patients may not show obvious evidence of disease, they do suffer from a number of problems, which persist long after initial treatment. [3],[4],[5],[6] Among these are physical problems such as pain and fatigue; psychological problems such as fear of recurrence and inability to cope with the disease and its treatment, as well as psychosocial problems such as family worries and sexual problems. [7],[8] Hence there is a need to provide education, information and support over time.

There are few studies from India which have dealt with QOL issues in breast cancer patients. [9],[10] Most of them have evaluated QOL in breast cancer patients during the course of their treatment and have found deterioration in scores of various domains on being administered chemotherapy, whereas radiotherapy had only local adverse effects. [11],[12] However, none of them have dealt with long-term adaptation beyond the early follow-up. Hence we planned this cross-sectional study to investigate the QOL in patients of breast cancer beyond the 1 st year of their treatment and to identify their specific information and rehabilitation needs.

 » Materials and Methods Top

This descriptive cross-sectional study on QOL and rehabilitation needs in patients of breast cancer was carried from March 2009 to March 2010. Patients who were diagnosed with local or locoregional breast cancer and had undergone treatment between 1987 and 2008 and were coming for follow-up were included in the study. Only those patients whose initial treatment has taken place at least 1 year before this study were included. Patients with metastatic breast cancer at first presentation or with other systemic illnesses such as Diabetes, depression, coronary artery disease etc., were excluded from the study.

During this period of time, depending on the stage of the disease, the patients either underwent initial surgery followed by adjuvant chemotherapy or neoadjuvant chemotherapy followed by surgery. Patients received Radiotherapy after breast conservation surgery and for defined indications for post mastectomy radiotherapy. Large majority of patients received tamoxifen for 5 years irrespective of receptor status, till recently when receptor status and aromatase inhibitors were inducted in the institutional protocol. The scheme of medical after care was regular visits at 3 months intervals during first 2 years after initial treatment, semi-annually for the next 2-5 years and annually for more than 5 years after initial treatment.

As the QOL issues are known to change with the passage of time after treatment, we divided patients in our study into the following three groups according to the duration of follow-up (Group 1: 1-2 years; Group II: 2-5 years; and Group III: >5 years). The division was based on the different schemes employed in the follow-up of the patients as well as established knowledge about the course of the disease. Due to cross-sectional design of the study, changes in QOL over time in our patient population could only be made indirectly.

Patient information was collected from their medical records. Socio-demographic variables included age at diagnosis, marital status, religion, level of education, occupation, and socioeconomic status. Clinical variables included symptoms, cancer stage, type of surgery, menopausal status, hormonal therapy, chemotherapy and radiotherapy.

The QOL was assessed using functional assessment of cancer therapy-breast (FACT-B) version 4. The instrument has both a generic part Functional assessment of cancer therapy-General(FACT-G) and a breast cancer specific subscale (BCS). It is easy to complete (most in 5-10 min) and has been shown to have good validity and reliability properties. [13],[14] It has a

36 items self-administered scale consisting of four general subscales, such as Physical well-being (PWB), Social well-being (SWB), Functional well-being (FWB) and Emotional well-being (EWB). The fifth subscale contains 9 items and is specific for breast cancer (BCS). The instrument has multiple scoring options: Subscale scores, total score (FACT-B and FACT-G) and trial outcome index (TOI). FACT-G has a stronger focus on social and emotional aspects. TOI, which is the sum of PWB, FWB and BCS is an efficient summary of index of physical/functional aspects.

Written consent was obtained from all the patients prior to administering the tool. The study was approved by the Institutional research board and the Ethics committee. The test was administered and scored in accordance with the instructions in the manual for the version 4 of the functional assessment of the chronic illness therapy measurement. [15] Patients were personally interviewed according to the FACT-B questionnaire. After administering the questionnaire, discussion was continued as a semi-structured interview to identify the specific information and rehabilitation needs of these patients.

Statistical analysis

For comparison of socio demographic and clinical data in the three groups one way ANOVA followed by Tukey test was applied. FACT-B subscales were compared between the three groups using analysis of covariance after adjusting for variables for age, religion, marital status, chemotherapy and radiotherapy. Unpaired student's t-test was used for studying the association of demographic and clinical variables with FACT-B subscale scores.

The results of semi-structured interview were analyzed by counting the number of patients expressing a particular concern or need. The exercise was individually done for all the concerns and the needs were discussed with the patient. The results were expressed as percentage of the patient population having a particular need or problem.

 » Results Top

A total of 154 patients participated in the study and completed the questionnaire and interview. There were 64 patients in Group I (follow-up 1-2 years), 48 in Group II (follow-up 2-5 years) and 42 in Group III (>5 years follow-up).

Demographic and clinical profile of the study population

The demographic and clinical profile of the patient population is presented in [Table 1] and [Table 2]. Patients in Group III were older than the other two groups. The mean age in Group I, II and III was 47.4 years, 43.3 years, and 59.1 years respectively. Majority of the patients were Hindus (82%). More than 90% patients were married. However, there was a significantly higher proportion of widows in Group III (24%). Majority of the population was illiterate (66.2%), unemployed (91.5%) and from low socio-economic strata (74%) underscoring the fact that public healthcare services are mostly accessed by the poor section of the society.
Table 1: Demographic profile of study groups

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Table 2: Clinical characteristics of study groups

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Amongst clinical variables, breast lump was the most common presentation in all three groups. Majority of patients were in clinical stage II and III at the time of diagnosis (Stage I-20%, Stage II-49%, Stage III-30.5%). Modified radical mastectomy was the most commonly performed procedure (92%). Almost all patients received chemotherapy and hormone therapy. Majority of the patients (83%) were without any evidence of local or systemic recurrence at the time of QOL assessments. Mean duration of follow-up was 18.2 months ± 3.06 months for Group I, 46.0 months ± 20.8 months for Group II and 72.0 months ± 8.00 months for Group III.

QOL assessments

The results of the QOL subscales in the three groups are summarized in [Table 3]. The overall FACT-B score was maximum in Group III (89.83 ± 12.80), second highest in Group II (85.75 ± 20.15) and lowest in Group I population (79.06 ± 14.60). FACT-B score was significantly better in Group III versus Group I according to established minimally important differences score. [6] As higher scores indicate a better QOL, patients with over 5 years follow-up had overall the best QOL.
Table 3: Functional assessment of cancer therapy-breast - subscale and overall scores for the three groups

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FACT-G score (which does not take into account the breast cancer specific subscale (BSS) score) was highest for Group II population (67.22 ± 18.96). Group II population enjoyed the best social, emotional and FWB among the three groups but their breast specific quality was, worse than other groups. TOI score was highest amongst Group III and significantly better compared to Group I.

Analysis of individual subscales

PWB scores

0Group III patients enjoyed the best PWB score. Analysis of individual items on this subscale was done to identify areas of maximum concern. Pain (Group I: 2.02 ± 1.06, Group III 2.92 ± 0.79, P
= 0.021), botheration by side effects (Group I: 1.86 ± 1.01, Group II 2.18 ± 1.47, Group III 3.25 ± 0.87), (Group I vs. III: P =0.000) and feeling of being ill (Group I 2.23 ± 1.02, Group II 2.47 ± 1.33, Group III 3.17 ± 0.58, Group I vs. Group III P = 0.015) were rated significantly poorly in Group I compared to Group III.

SWB scores

Best SWB scores were noted in Group II patients. Individual item which made most significant difference to the SWB was closeness to the partner, which was significantly lower in Group III (Group I: 2.55 ± 0.08, Group II: 2.79 ± 0.70, Group III: 1.73 ± 1.42, Group I vs. Group III: P =0.016, Group II vs. Group III: P =0.011). Support and closeness to friends were the least scoring items.

EWB scores

Best scores were again enjoyed by patients in Group II. On individual item analysis, mean score for item "I am satisfied with how I am coping with my illness" was significantly lower in Group III. (Group II vs. Group III, P = 0.014).

FWB scores

These were best in Group II, but the difference between the groups was not significant. The best rated item was "I have accepted my illness" in all three groups and most poorly rated item was that my work (including work at home) is fulfilling.

Breast specific subscale

Was poorest in Group II patients (Group II vs. Group III, P = 0.039) and items which had worst scoring were worries like a family member might get the same illness, weight changes and not being able to feel like a woman.

Association of demographic and clinical variables with QOL

Amongst the demographic and clinical variables patient's age, marital status, education, employment, social class, clinical stage and recurrent disease have a significant impact on patient's QOL. Higher PWB scores were noted with early breast cancer (P = 0.029); improved SWB score with education and employment (P = 0.044, P = 0.03); lower EWB score in widowed women (P = 0.034). BSS was influenced by age and marital status.A lower BSS was noted in younger women (<40 years) (P = 0.010). Weight gain, especially following chemotherapy induced menopause and body image issues accounted for lower BSS score. The number of patients having undergone breast conservation or reconstruction was too small to have an impact on the results in our study.

Needs assessment

Results of our semi-structured interview to identify measures, which would help overcome restrictions in life, yielded some interesting findings. [Table 4] Almost 100% patients felt they wanted to have more information about their disease, their chance of cure and life expectancy, possibility of disease affecting other family members, the duration of treatment, the expense involved etc., so that they could plan for the future. Especially the demand for expensive investigations such as tumor markers and Positron Emission Tomography (PET) scan subjected them to extreme stress. Fifty six percent were bothered by symptoms such as pain in arm and shoulder, lack of energy, limb swelling and wanted effective remedy. Restriction in sexual relationship was reported by 37% patients, but they felt too inhibited to discuss this with their doctor or even their spouse. Many of them wanted to improve upon their body image and wished that options of conservation or reconstruction were available to them. 36% wanted counseling and risk assessment of their family members to allay their fears. Interaction with other patients had mixed results and 17% reported their worries increased after talking to them. However, none of them interacted with any support group. Difficulty in maintaining continuity of medical care was another problem cited by the 32% patients. They also were confused who was the right person to follow-up and generally preferred interacting with the operating surgeon rather than other members of the multidisciplinary team.
Table 4: Information and rehabilitation needs as assessed in the semi-structured interview

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 » Discussion Top

QOL assessments are important tools to judge how survivors are coping with the late effects of their illness and its treatment. Sufficient evidence is available to show that breast cancer survivors suffer from a myriad of adjustment problems and require rehabilitation and support services. [6] Identification of these specific late psychosocial sequelae help clinician target possible late effects that need special attention. Besides, information on long-term QOL may help healthcare planners determine those patient services that should be maintained or developed.

The results of our study show that FACT-B scores in Indian breast cancer survivors are relatively lower than their western counterparts. Although, higher scores reported in this study in American women (overall FACT-B score ± SD: 110.82 ± 19.0), are not directly comparable to data in our patient population (overall FACT-B score ± SD: 83.5 ± 13.2). [16] Lower scores can also be attributed to the fact that most of the identified factors associated with poor QOL such as illiteracy, unemployment and low socio-economic status had a high prevalence in our patient population since the setting of this study was a public health-care facility. Still broadly speaking, breast cancer patients seemed to cope well with the stress of treatment of breast cancer and bounce back to normal life by 1 year. However, restrictions in QOL continue to be experienced in different domains of life, which also change during the course of time. Our results show that patients in early follow-up have mainly restrictions in physical and functional well-being. Strong family support takes care of emotional and social component. As they are recovering from acute effects of their illness, their physical appearance is also not of much concern to them. Patients in the intermediate phase of follow-up are well recovered and want to bounce back to their active social life and now the appearance specific concerns begin to bother them. Patients in the long-term follow-up are well recovered from physical and functional and breast specific restrictions but suffer in the domains of social and EWB.

After initial recovery, decline in well-being in various domains is reported by other researchers also. Ganz et al. reported that maximum physical and psychological recovery was achieved 1 year after initial treatment. [17] In the following 2 years, however, there was deterioration of QOL in many areas such as physical and recreational activities, body image, sexual interest, and sexual functioning. In a similar study, Dow et al., identified a number of problems, which persisted long after initial treatment. [3] Among these problems were physical problems such as pain and fatigue, psychological problems such as fear of recurrence and an inability to cope with the disease and its treatment, as well as psychosocial problems such as family worries, and sexual problems. In this study attention was drawn to education, information and support over time.

In order to improve QOL of the patients, alleviation of physical problems such as pain, limb swelling, and lack of energy, which affected more than 50% of our patients are important problems, which need attention. Fatigue is identified as a problem affecting up to 40% patients by other researchers as well. [18] Depression, pain and weight gain/personal appearance were reported as the significant correlates of fatigue. [7] Various measures to tackle fatigue such as Role of yoga has been evaluated by various investigators with positive results and needs further exploration. [19],[20] Concern about loss of body image was another factor, which seemed to impair QOL in the intermediate follow-up group in our study and has been cited in other reports as well. [21] Many expressed their desire to have undergone conservative breast surgery. However, the relationship of type of surgery with QOL is an unresolved issue. [22],[23] Few studies from Tata Memorial Hospital, Mumbai have reported no significant difference in QOL between mastectomy and BCS patients. [11],[12] Besides in low resource settings such as ours, breast conservation or reconstruction can be offered to a very limited number of patients. Other options such as prosthesis or mastectomy bras may be more viable methods to address body image concerns.

One of the areas, which are not openly discussed by either the patients or their clinicians but impair QOL are sexuality issues. Sexuality issues were noted in 37% of our patients. Other studies too have reported high rates of sexuality concerns in breast cancer survivors. [24],[25] The reasons are obvious however, complex and include both psychological factors such as feeling of lacking physical attractiveness after breast surgery and somatic factors such as vaginal dryness, resulting from chemotherapy induced menopause or hormonal therapy. In orthodox societies issues relating to body image and sexuality are difficult for patients to discuss with male members of the treating team. Presence of a trained oncology nurse who can provide information and counseling services to these patients can be of great help in allowing these patients to open up and seek help. The reappearance of emotional problems in patients in long-term remission was seen in our study and has been reported in other studies as well. [26],[27] Finding of late social and emotional restrictions in the long-term survivors underlines the importance of various targeted interventions such as psychoeducational support program, self-management etc., which have been shown to improve QOL of breast cancer survivors. [28],[29]

 » Conclusions Top

To conclude, we can say there is a need to provide education and support over long- term to patients of breast cancer . Due attention should be paid to the unmet information needs of breast cancer patients. These can be easily addressed by ensuring free availability of information booklets in national and regional languages.

A breast cancer follow-up clinic, which evaluates patients QOL issues in detail and provide effective therapy for physical problems such as pain, limb swelling, fatigue etc., as well as appropriate counseling services to patients and families about anxiety, depression, sexuality issues, diet, exercise etc., can help these patients. Furthermore, ensuring easier accessibility of follow-up services by establishing a system of community based aftercare by a generalist who has been communicated detailed instructions about follow-up may help overcome many problems.

 » References Top

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  [Table 1], [Table 2], [Table 3], [Table 4]

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