Identification of the information needs concerning the physical symptoms of patients with breast cancer
F&W 2016; 11: 1
Holzapfel L.C. MSc, Hidding J.T. MSc
Background: Patients with breast cancer encounter many questions concerning management of their ongoing care after the completion of treatment. Objective: The aim of this study was to identify the information needs concerning the physical symptoms of patients with breast cancer, in the period zero to three months after the completion of chemo- and/or radiotherapy. Design: A qualitative cross-sectional study. Method: Data were collected by a focus group and individual interviews in which various relevant topics were discussed. Results: Twelve participants participated in this study with an average age of 50 years with a range from 39 to 72 years. The participants indicated information needs about the following physical symptoms: pain, seroma, complaints of the wound, neuropathies, restricted mobility of the arm, increase in weight, decreased muscle strength, loss of condition, fatigue, menopausal symptoms, oedema in the breast, axillary web syndrome, complaints of the scar, warm breast, red spots and a red and warm back. The participants indicated information needs about the cause and course of their physical symptoms. The participants also wanted to know if their physical symptoms are treatable. Furthermore they indicated that they wanted to know what physical symptoms they may or could expect. Conclusion: It is recommended that patients with breast cancer who have undergone their surgery and/or chemotherapy at the Martini Hospital (the Netherlands) and/or have undergone the radiotherapy at the University Medical Center Groningen (the Netherlands), be informed about the cause and course of their physical symptoms. The participants also need to be informed about the fact if their physical symptoms are treatable. Furthermore it is recommended that they be informed about what physical symptoms they can expect.
In 2015, 14.449 women in the Netherlands were diagnosed with invasive breast cancer (1). Through early detection and locoregional treatment following by (neo) adjuvant therapy, the prognosis for women with breast cancer has improved (2). That is why the patient population is increasingly confronted with the effects of cancer and its possible treatments. Examples of problems that may arise as a result of the treatment of breast cancer are: reduced shoulder function, lymphedema and a mastectomy pain syndrome (2). Also a premature menopause can occur. Beurskens et al (3) describe in the KNGF (Koninklijk Nederlands Genootschap voor Fysiotherapie) - Evidence Statement Breast cancer that young women who receive hormone therapy can very shortly start the menopause with the possible consequence hot flashes, decreased bone density and joint problems. Besides physical complaints, psychosocial issues and fatigue occurs (2). The national guideline Breast cancer, NABON 2012 (2) defines that aftercare is an essential part of the individual patient care during and after cancer treatment. Aftercare includes: information, guidance, discuss signs and symptoms, signaling immediate or late effects of the disease and treatment and focus on social impacts. However Haq et al (4) described that patients with breast cancer, following the completion of treatment and when they enter the follow-up phase, often recount feeling ‘lost in transition’, and are left with many questions concerning how their ongoing care and monitoring for recurrence will be managed. Akechi et al (5) have found that the patients’ needs were significantly associated with psychological distress (r=0.63, P <.001) and QOL (quality of life) (r=-0.52, P <.001). The more unmet needs experienced, the more stress patients experienced. In a non-randomised quasi-experimental study, Liao et al (6) investigated the effects of education and psychological support on anxiety, symptom distress, social support, and unmet supportive care needs of Taiwanese women newly diagnosed with breast cancer over 3 months after surgery. The experimental group received education and psychological support in the form of individual face-to-face and telephone follow-up sessions; the control group received routine care. The levels of symptom distress, unmet needs and anxiety for participants in the experimental group were lower at 1 and 3 months after surgery than for those in the control group.
To gain insight into the information needs of patients with breast cancer, a literature study was set up on this topic. A variety of recent studies were found. Breast Cancer Association Netherlands has eximinated the information needs concerning the disease and its effect of patients with breast cancer through an internet forum (Bforce) (7). The study included patients with breast cancer at different stages of the disease and everyone such as relatives and friends of patients who have had to deal with the disease. The investigation revealed that information on late effects, advantages and disadvantages of treatments, the expected course of illness, the possible side effects in the short term and how a treatment works was the most desirable. Kaur et al (8) investigated in a cross-sectional study the QOL in 154 patients with breast cancer beyond the first year of their treatment. The study also identified the specific information and rehabilitation needs of these patient. Almost 100 percent of the patients felt they wanted to have more information about their disease, their chance of cure and life expectancy and the duration of treatment. Fifty-six percent was bothered by symptoms such as pain in arm and shoulder, lack of energy, limb swelling and wanted effective remedy. Kowalski et al (9) investigated the information needs of 5,024 newly-diagnosed patients with breast cancer who recently had surgery. The four areas with highest unmet information needs were in relation to health promotion activities, physical and mental strains in daily life, rehabilitation services, and healthy lifestyles. A study by Fiszer et al (10) eximinated the concerns of woman diagnosed with breast cancer clustered around psychological and information needs. Patients with breast cancer, following the completion of the medical treatment are left with many questions concerning how their ongoing care will be managed, but the contents of this information needs has not been investigated yet.
Aftercare is an essential part of the individual patient care after treatment of cancer (2). Eduction can help to reduce unmet needs and reduce stress by patients with breast cancer (6). For this reason, oncology physiotherapists in the Northern Netherlands suggest education about physical symptoms for patients with breast cancer who have just completed their medical treatment. To offer customized care, firstly insight must be gained about which information about physical symptoms patients want to recieve information. The following research question was formulated: Which information about physical symptoms want curatively treated, post-operative breast cancer patients in the northern Netherlands to receive, zero to three months after completion of chemotherapy and/or radiotherapy?
A qualitative study was designed and data were cross-sectional collected. The study population was a directed sample of typical cases. Participants were enrolled on the basis of the following criteria: the participant lives in North Netherlands (Groningen, Friesland of Drenthe); the participant is diagnosed with breast cancer; the participant is treated with curative intent; the participant had surgery; the participant was treated by chemo- and/or radiotherapy, the participant has zero to three months ago finished chemotherapy or radiotherapy; hormone therapy and immunotherapy did not have to be completed; the participant has a good command of the Dutch language. Patients who had recurring breast cancer, patients younger than 18 years, men with breast cancer and patients who still received chemotherapy or radiotherapy were excluded.
This study does not reach within the Law Medical Research; this is confirmed by a letter from the Medical Ethical Committee of the University Medical Center Groningen. Hospitals in the Northern Netherlands (thirteen in total), oedema and/or oncology physiotherapists in North Netherlands who are members of the Dutch Association for Physical Therapy in the Lymphology and Oncology, the Hamel Huys, the Behouden Huys and Breast Cancer Association Netherlands were asked to request patients who meet the inclusion criteria to participate in the study. Through a newsletter patients were informed about the study and then they could contact the researcher. The organizations where the patients were asked to cooperate with the study, had noted the names and contact information of the patients who wanted to cooperated in the study. This allowed the researcher to contact the patient when that was necessary. Before participating in the study, the researcher had informed the participants about the purpose of the study and the participants had signed an informed consent.
Data were collected trough a focus group and individual interviews where topics were discussed. The focus groups and individual interviews were taken verbally by the examiner in physiotherapy practice Medical Center South Groningen (The Netherlands). The focus groups and individual interviews were recorded with an audio recorder. To ensure an open question structure a second person was present at the focus group and the individual interviews. Before the start of the data collection the patient characteristics of the participants were collected. Participants could always stop with participating the study without giving reasons.
The study was initiated with a focus group. The expected duration of the focus group was one hour. The topics discussed during this group had been established based on the Guideline Mammacarcinoom, NABON 2012 (2), the KNGF Evidence Statement Breast Cancer from Beurskens et al (3) and the KNGF- standard Move intervention oncology from Stuiver et al (11) and were criticized by two experts from the profession. The topics 'physical symptoms of participants’ and ‘information needs of participants about physical symptoms’ were discussed during the focus group. Only the physical symptoms that were mentioned in combination with information needs, were included in the analysis. The audio material of the focus group was processed as text in a Microsoft Word file. Firstly an open encoding (in vivo) in Word was executed. In order to achieve an ordering of the open codes, an axial encoding (in categories) followed. Based on the results of the focus group an inventory of missing topics was made. If necessary, topics were added. The adjusted topic list was criticized by two experts from the profession. Individual interviews were done subsequently with the aid of the adjusted topic list. The expected duration of an individual interview was 15 to 30 minutes. A transcript of these interviews was also made. The research material resulting from the individual interviews was open encoded and axially encoded and added to the already analyzed material from the focus group.
Individual interviews were conducted until saturation had occurred in the analysis. After saturation, a replication of the study was done, wherein three more interviews were conducted in order to prevent missing data. Finally a selective encoding was executed in which similarities, differences, and related patterns were searched for. At the end of this stage a reflection was done, focussing on answering the research question. The results of the study were criticized by two experts from the profession. A member check was also used for the results. All data is processed anonymously.
Twelve participants enrolled in the study. The average age of participants was 50 years with a range from 39 to 72 years. The demographic data of the participants are shown in table 1. Five participants attended the focusgroup and seven individual interviews were executed. Based on the focus group the topics 'self-management of physical symptoms’ and ‘coaching by physical symptoms' was added to the topics list. The results of the focus group and individual interviews were similar.
Physical complaints of participants: The participants indicated information needs about the following physical symptoms: pain, seroma, complaints of the wound, neuropathies, restricted mobility of the arm, increase in weight, decreased muscle strength, loss of condition, fatigue, menopausal symptoms, oedema in the breast, axillary web syndrome, complaints of the scar, warm breast, red spots and a red and warm back.
Informations needs of participants about physical symptoms: participants indicated information needs on the cause of their physical symptoms. A participant who experienced a restricted mobility of her arm said:
‘Is it because of the surgery or is it just damaged?’ (participant 3)
A participant who experienced pain, indicated:
‘Is it possible that it hurts here because of the radiotherapy?’ (participant 9)
Participants also wanted to know if the physical symptoms they experienced are reversible, and if the physical complaints they have or had were caused by the breast cancer or the treatment. A participant who experienced symptoms of her scar said:
‘I want to know if this is normal or whether it will disappear.’ (participant 1)
Another participant said:
‘You think you're done and it's going to be better and sometimes you feel something and you think, is the cause the breast cancer and is it reversible?’ (participant 5)
In addition, participants would receive information about what physical symptoms they may or could have expected. A participant who experienced pain during chemotherapy said:
‘I wanted to have explicitly explained that intense pain could occur.’ (participant 7)
Another participant said:
‘That seroma could occur, I had like to have know that beforehand.’ (participant 11)
Self-management of physical symptoms: Participants indicated that they wanted to receive information about what they can or could do themselves to their physical symptoms. Participants said:
‘What can you do or what should you not do with the scar?’ (participant 4)
‘You want to know especially if you have something what you can do best.’ (participant 12)
Coaching by physical symptoms: Participants indicated that they need/needed coaching by their physical symptoms. A participant who had gained weight since the use of hormone medication, said:
‘I’m wondering if I shouldn’t be coached, that I have to prevent me from fat production.’ (participant 3)
Another participant said the following:
‘You do need someone who tells you to do that or do not do that.’ (participant 12)
The final analysis resulted in the following items: ‘What is the cause of the experienced physical symptoms?; ‘What is the course of the experienced physical symptoms?’ ‘Are the experienced physical symptoms treatable?’ and "What physical symptoms are to be expected?"
Additional Information: Participants indicated that they had received information about physical complaints; other participants indicated that they did not receive any or sufficient information about physical complaints. Participants also indicated that they did not know where they could go with a question about physical complaints, that they had not remebered information and participants indicated that they did not want to know information about physical symptoms.
The participants indicated information needs about the following physical symptoms: pain, seroma, complaints of the wound, neuropathies, restricted mobility of the arm, increase in weight, decreased muscle strength, loss of condition, fatigue, menopausal symptoms, oedema in the breast, axillary web syndrome, complaints of the scar, warm breast, red spots and a red and warm back. The participants expressed information needs about the cause and course of their physical symptoms. The participants also wanted to know if their physical symptoms are treatable. Furthermore, the particpants indicated that they wanted to know what physical symptoms they can or could expect. In additional participants indicated that they did not know where they could go with a question about physical complaints, that they had not remebered information and participants indicated that they did not want to know information about physical symptoms. Participants also indicated that they had received information about physical complaints; other participants indicated that they did not receive any or sufficient information about physical complaints. Information and support for physical symptoms and physiotherapy is extensive described in the Guideline Breast cancer, NABON 2012 (2). When information and education about physical symptoms is early described in the care pathway and when patients are well informed about their physical symptoms, patients on the long term have fewer unmet needs. In addition, treatment for physical problems through an oncology physiotherapist can be indicated in the individual care plan. Oncology physiotherapist can then give guidance, support and treat the physical symptoms of patients with breast cancer (12). Participants in this study indicated that they received information about physical complaints; other participants indicated that they did not receive any or sufficient information about physical complaints. This makes it is unclear whether the guideline Breast cancer, NABON 2012 (2) is followed; it raises the question if all the participants are informed in the same way. However there must be take into account that some participants indicated that they did not remembered the information they received and some participants indicated that they did not wanted to receive information. For these reasons, it should be interpreted cautiously that participants indicated that they did not received information. Participants indicated that they did not know where they could go with a question about physical complaints. This study did not examine the question of who and how the participants would to receive information from concerning physical complaints. To answer this question more research needs to be done; this could be done by conducting a survey among patients with the same inclusion criteria as this study. This may contribute to the provision of best possible customized care. Provided the knowledge of the author is sufficient, this is the first time research had been done about what information about physical symptoms patients with breast cancer wants to receive, zero to three months after completion of chemotherapy and/or radiotherapy. Burris et al (13) investigated the information needs in 90 patients with breast cancer, ten weeks after completion of radiotherapy. In that study participants reported unmet needs for physical complaints and information. Specifically pointed out was that patients would help in dealing with the side effects of the treatments; there has not been a discussion on the content of the information that they need and also there is not defined what support the patients wanted with their physical complaints. This is the first time a closer look was taken on the information needs about physical symptoms of breast cancer patients, zero to three months after completion of chemotherapy and/or radiotherapy. In several studies (5, 7-10, 14-18) the information needs of patients with breast cancer was examined, but these studies use different inclusion criteria relating to the time after diagnosis/treatment and studies include both curative and palliative treated patients. Information needs of breast cancer patients was examined immediately after diagnosis, and more than three months to years after diagnosis. These studies also show that patients need information, education and support for physical complaints. So there is a need for information and support for physical symptoms at an early stage after the diagnosis of breast cancer and this need continues to exist a long time after treatment. When information is given at the right time to patients, the patient self gets control of the effects of the treatment and can therefore decide himself when he consults the right person for help. Trough early detection, the effects of the treatment may be better managed, with fewer long-term effects.
The study has a number of strengths. Participants with a wide range of ages enrolled in the study; relating to the age, a large part of the profile of the population group with breast cancer is represented (19). In addition participants with a diversity in education are enrolled in the study. Von Heymann-Horan et al (20) investigated that unmet needs are associated with younger age (OR 0.92; 95.0% CI 0.89-0.95) and higher education (OR 2:49; 95.0% CI 1:14 to 5:44). Because of this study included participants with a wide range of ages and education levels, the risk of a bias was eliminated relating to the results on age and education. Objectivity of the study was ensured as much as possible because the researcher managed two experts from the profession to critisize the methodology and analysis. Additionally, to ensure an open question structure a second person was present at the focus group and the individual interviews. The focus group created new topics, which have been discussed in the individual interviews. The new topics were thus likewise discussed in the focus group. The results of the focus group and the individual interviews were consistent and replication did not give new results. This agreement in results increases the validity of the study. The study has some limitations. The participants are living in the provinces of Groningen and Drenthe. Kaur et al (8) and Fiszer et al (10) describe that in terms of information needs, there is a difference in results at different cultures in patients with breast cancer. The culture in different parts of the Netherlands does show some differences, but it is expected that they are not so big that it will affect the results of this study. However, all the participants, except one, had surgery and treatment by chemotherapy and/or hormone therapy and/or immunotherapy in the Martini Hospital (the netherlands) and they have undergone radiotherapy in the UMCG (University Medical Center Groningen, the Netherlands). This makes it likely that the participants of this study have received the same information and/or missed the same information. Despite that national aim to follow the Guidline Breastcancer, NABON 2012 (2), hospitals can give different information to patients. When more hospitals were included in this study, perhaps other results followed from the research. For this reason, it is not possible to indicate whether the results of this study can be generalized to all of the Netherlands. A replication of this study should be done in all of the Netherlands or in another part of the Netherlands to determine the generalizability of this study.
It is recommended that patients with breast cancer who have undergone their surgery and/or chemotherapy at the Martini Hospital (the Netherlands) and/or have undergone the radiotherapy at the University Medical Center Groningen (the Netherlands), should be informed about the cause and course of their physical symptoms. The participants also need to be informed about the fact if their physical symptoms are treatable. This information should be included in the individual care plan. Furthermore, it is recommended that they should be informed about what physical symptoms they can expect; this should be included in the care pathway for these patients. Information must be included early in the care pathway of patients with breast cancer; this will contribute to reduce unmet needs and stresses of this patient group. Of who and how patients want to receive this information, will need to be investigated.
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