National Survey
Eight breast cancer units (8 Provinces) were contacted, and 50 health professionals received the survey. Seventeen (34%) HCPs responded to the survey (Table 1& supplementary file 1). It is notable that 7(41%) were from public and 10(59%) from private institutions. Physiotherapists 5 (50%) formed the largest group of responders in the private sector compared to the public where doctors 5 (71%) were the main responders. Of the 8 provinces only 3 are represented in the survey data.
Upper limb assessment in the public sector is carried out by Physiotherapists and Medical Oncologist. Only 33% of respondents were formally trained to assess and manage BCRL in public sector versus 67% in private. The private sector offers upper limb services at every point in the care pathway as opposed to the public sector which is limited to post-surgery and post-radiotherapy. A notable disparity is seen between numbers of survivors seen monthly in private vs public.
Table 1
| private n (%) | | public n (%) | | total n (%) |
Total Respondents | 10 (59) | 7 (41) | 17 (100) |
Profession of respondents |
| Doctor | 0 (0) | 5 (71) | 5 (29) |
| Physiotherapist | 5 (50) | 2 (29) | 7 (41) |
| BC nurse | 1 (10) | 0 (0) | 1 (6) |
| Other | 4 (40) | 0 (0) | 4 (24) |
Rehab service delivery |
Are there official guidelines/ protocols for the assessment and management of: |
| Upper limb functioning (yes) *missing 1 | 5 (56) | 4 (57) | 9 (56) |
| BCRL (yes) *missing 1 | 7 (78) | | |
Which health practitioner/s conduct/s the assessment and management of upper limb pain and dysfunction among breast cancer patients? *missing 1 |
| Physiotherapist | 6 (67) | 3 (43) | 9 (56) |
| Medical Oncologist | 1 (11) | 3 (43) | 4 (25) |
Management of BCRL |
Have you ever received clinical skill training for assessment and management of BCRL? |
| Yes | 10 (100) | 2 (33) | 12 (75) |
How many breast cancer patients with BCRL do you see per month? *missing 6 |
| None | 1 (11) | 1 (50) | 2 (18) |
| 1–4 | 3 (33) | 1 (50) | 4 (36) |
| 5–10 | 3 (33) | 0 (0) | 3 (27) |
| 10–20 | 1 (11) | 0 (0) | 1 (9) |
| > 20 | 1 (11) | 0 (0) | 1 (9) |
Do you assess the breast cancer patients for BCRL? |
| Yes | 10 (100) | 4 (57) | 14 (82) |
Why do you not assess the patients for BCRL? *missing 1 |
| Not trained | - | 2 (29) | |
| Don't see follow-up patients | - | 1 (14) | |
Do you provide the treatment for breast cancer patients with BCRL? |
| Yes | 9 (90) | 4 (57) | 13 (77) |
At what phase/s of the breast cancer treatment process are the breast cancer patients when you treat them for BCRL? |
| At diagnosis | 2 (20) | 0 (0) | 2 (12) |
| Post-surgery | 6 (60) | 2 (29) | 8 (47) |
| During RT | 6 (60) | 0 (0) | 6 (35) |
| Post RT | 7 (70) | 3 (43) | 10 (59) |
| During Chemotherapy | 6 (60) | 0 (0) | 6 (35) |
| Post Chemotherapy | 7 (70) | 0 (0) | 7 (41) |
| Palliative | 5 (50) | 1 (14) | 6 (35) |
| Prior adjuvant therapy | 3 (30) | 0 (0) | 3 (18) |
| During adjuvant therapy | 4 (40) | 0 (0) | 4 (24) |
| Post-adjuvant therapy | 4 (40) | 1 (14) | 5 (29) |
| Post-treatment (Completed treatment but accessing facility for BCRL symptoms) | 7 (70) | 1 (14) | 8 (47) |
UL pain and dysfunction |
Have you ever received clinical skill training for assessment and management of upper limb pain and dysfunction (decreased range of movement, e.g.)? |
| Yes | 9 (90) | 2 (40) | 11 (73) |
How many breast cancer patients with upper limb pain and dysfunction do you see per month? *missing 4 |
| None | 1 (11) | 2 (50) | 3 (23) |
| 1–4 | 5 (56) | 1 (25) | 6 (46) |
| 5–10 | 2 (22) | 1 (25) | 3 (23) |
| 10–20 | 1 (11) | 0 (0) | 1 (8) |
Do you assess the upper limb pain and dysfunction of breast cancer patients'? (E.g. can the pt. move the affected arm above the head?) |
| Yes | 10 (100) | 4 (80) | 14 (93) |
Who in your unit does assess the breast cancer patients for upper limb pain and dysfunction? |
| Medical Officers | - | 1 (14) | - |
Do you provide treatment for breast cancer patients with upper limb pain and dysfunction? |
| Yes | 8 (80) | 3 (60) | 11 (73) |
At which phase/s of the breast cancer treatment process are the breast cancer patients when you treat them for upper limb pain and dysfunction? |
| At diagnosis | 2 (20) | 0 (0) | 2 (12) |
| Post-surgery | 6 (60) | 3 (43) | 9 (53) |
| During RT | 5 (50) | 1 (14) | 6 (35) |
| Post RT | 6 (60) | 0 (0) | 6 (35) |
| During Chemotherapy | 6 (60) | 0 (0) | 6 (35) |
| Post Chemotherapy | 7 (70) | 0 (0) | 7 (41) |
| Palliative | 6 (60) | 0 (0) | 6 (35) |
| Prior adjuvant therapy | 4 (40) | 0 (0) | 4 (24) |
| During adjuvant therapy | 5 (50) | 0 (0) | 5 (29) |
| Post-adjuvant therapy | 5 (50) | 0 (0) | 5 (29) |
| Post-treatment (Completed treatment but accessing facility for BCRL symptoms) | 8 (80) | 0 (0) | 8 (47) |
Focus groups.
A total of 8 FGs were run, with 34 BC survivors (11 at site 1 and 23 at site 2) and 8 health care providers. The survivors median age was 55 years, the youngest enrolled was 38 years. Only 41% of the survivors had formal employment with most doing manual work. Of those employed, or with some form of income, 56% had a household income of R5000.00 (281.06€ or 341.23$) or less per month. 97% of the survivors had formal school education. 25 (74%) of the cancer survivors reported that they experience some form of shoulder morbidity and 22 (65%) had developed lymphoedema post cancer treatment. The recruited health care providers included a consultant doctor, breast cancer nurses, physiotherapists and occupational therapists.
Four overlapping themes were identified from all FG codes and developed into propositions.
1. Education
Proposition 1
Poor education and knowledge is disempowering survivors thereby limiting their ability to self-manage upper limb problems.
Survivors have general dissatisfaction of information received at public facilities; health practitioners do not provide survivors with information about the risk of developing upper limb disorder or how to manage the long-term side effects. Participant 6: “I receive absolutely no information from health practitioners, I should’ve known from my past experience, surgeons don’t give information, but he also had no nurse to give information, nobody assisted me, that’s what I’m so upset about.” Participant 27: “They don’t tell you the nitty gritty stuff that you really need to know.” Participant 18: “No, no one told me, I didn’t know that all these things are going to happen to me.” This limited availability of information from the health facilities has left many of the cancer survivors with no option but to self-educate, to understand their new reality. Participant 10:” I discovered quite a lot of my own, I had to find a specialist, nobody ever gave me that information. what I do know about lymph is through the additional studying I have done. So, I’ve learnt a lot. I’ve learnt that you must self-diagnose”. One of the evident risks of patients not receiving formal upper limb disorder education is the conflicting advice survivors receive from family members and HCP with no knowledge of upper limb disorder, or fellow survivors on how to manage the disorder and this may delay patients’ rehabilitation. Participant 17: “My sister told me that if I don’t exercise my arm it will stay like this.” Participant 2: “I remember coming home from surgery and my sister-in-law and my husband going, no, no, no don’t even wash just rest.” Participant 6: “And I went to my doctor and she then said she could not see what was wrong, oh, the swelling of your arm will go down, just walk up the wall with your fingers”. The main form of information offered to patients are take-home pamphlets, however, not all survivors receive the information or remember getting the pamphlet. Participants 4: I am sure, definitely not they never gave me one (pamphlets). The concern on the limited information shared at the facilities raised by survivors during FG discussions was further confirmed by the health providers during focus group discussions, Participant 1: “From our side in terms of oncology, that is a point where it’s very weak in terms of our knowledge and how to advise patients for lymphoedema care. We leave it to the nursing sisters and the physios and then the lymphoedema clinic.”
2. Experience of Upper Limb Morbidity.
Proposition 2
SA breast cancer survivors experience well known emotional, physical and functional side effects of treatment which impact on QoL.
Participants reported a deterioration in quality of life due to upper limb disorders, finding it difficult to perform daily tasks with the affected arm e.g., simple tasks like combing hair or doing housework. Participant 20: I can’t really lift the arm. I do not have power in my arms anymore. I used to be able to lift heavy things. I can’t do that anymore. Participant 9: “My husband sometimes wants me to lift this, to help him to carry this and this, then I said, you know what, I really can’t do it.” Survivors living with upper limb disorders also experienced psychological distress, due to continuous concern about body image, the constant body changes and low self-esteem. Participant 12: "I felt too embarrassed to go back aquarobics for my lymphoedema.” Participant 23: “I had no issues and I just got depressed; I was in a bad, bad place.” Participant 15: “For me the continuous body changes can change the tone for the day you know”. Respondents also reported on living in discomfort, due to the arm swelling, chronic fatigue and pain on the affected arm. Participants 26: “It pains terribly, you just get a sudden stabbing pain.”
3. Current Rehabilitation Services
Proposition 3
Current care pathways do not provide long term surveillance and management for the development of latent upper limb side effects.
Proposition 4
BCRL care services are fragmented and lead to high personal cost for the survivor.
Survivors described rehabilitation services as fragmented and non-existent, with overcrowded facilities and long waiting periods leaving many patients feeling neglected by the health sector. Participant17: "I had my surgery. then I was discharged then… nothing." there was nobody to direct me” Participant 29: “I rehabilitated myself, we have had no rehabilitation.” Respondents also feel that the staff were always rushed, making it difficult to engage the health providers on any changes happening to their body. Participant 7: “I understand there’s a lot of people that perhaps didn’t have time to do massages (BCRL care). I just found that she was really rushed and on occasions, I thought that we should have had more time. Participant 8: I just felt she just wanted to get away.” To date, upper limb rehabilitation services are mostly offered in the private health sector which comes at a great personal cost for survivors without medical insurance; Participant 15: "As the average person you’ve just got to fork out a lot, and it’s this constant thing”. HCPs confirmed fragmented health services, overcrowded and understaffed facilities and limited time spent with patients. Participant 3: “the day hospitals, there’s too many patients, you know, the problem with our system is everything is flooded. Especially now, we’re discharging a lot of patients from our clinic very early because we can’t keep up with the numbers. Outcomes and what happen to our patients we do not know, we have so much clinical work.”
4. Future Rehabilitation Services
Proposition 5
Rehabilitation services should be personalized, delivered at different points of care, and in different formats, within the public health sector.
Proposition 6
Group exercise programs delivered in communities could engender a shared support mechanism.
Survivors strongly recommended an individually tailored rehabilitation plan to meet the recovery needs of the survivor. Participant 19: “Each of us is an individual and each of us has separate problems and it needs to be handled separately.” Information on the possibility of developing lymphoedema and upper limb disorders should be given to patients at the point of diagnosis, with refresher education post treatment. Participant 2: “for me there should be much more information before the operation or at the start of a treatment. It should be one of the first things that they discuss.” Participant 22: “A person forgets quickly; post treatment education would have helped.”
To improve educational access and reduce information overload on the first hospital visits, upper limb disorder education can also be shared on different platforms where patients can easily access at a later stage when mentally ready. For example, cellphone Apps, brochures, booklets, information talks and short video clips. Video clips should be used to demonstrate how to do the exercise. Participant 9: Most people have smart phones so little videos (WhatsApp video) are useful. Yes, seeing how the exercise is done is much more useful than reading about it (all participants nod in agreement). Information talks and discussions will also be useful.” Participant 8: “Pamphlets/ brochures/ booklets, it’s permanent, it’s there forever.”
Survivors supported the use of trained community health workers and other survivors to deliver upper limb services at the hospitals and communities. Participant 6: “You know the community health can be taught the basics, add into their kit of teaching lymphoedema management, pre-post-op exercises.” Participant 26: “I would say it needs to be a trained person and a survivor. I mean, maybe the trained person doesn’t have time today for that one, then the survivor is there to take us further.”
Appropriate exercise should be used as an intervention to manage and prevent the development of upper limb disorders. Participant 11: “Pre and post-surgery exercise is important anybody can learn that, you don’t have to have a specialist to… the swimming exercises, the door exercises, getting outside and getting lots of walk in there, so get your circulation moving. Those things could be so helpful to people and as a prevention rather than waiting, because it’s shocking to see how bad your arm gets”. Health practitioners also supported the development of a new treatment pathway for upper limb disorders like lymphoedema. Health practitioners stressed the importance of relevant, early interventions, which will meet the needs of the patients. Participant 4: We need to adapt them (care pathway) because all those things are copied and pasted from the internet, which is not always relevant to our patients. With the intervention you need to catch them(survivors) early on to change their lifestyle.
Modelling data from the FG themes/sub-themes into an Interrelationship Diagraph demonstrates a strong relationship between education as a driver of all other variables (Out = 4). Upper limb morbidity emerges as the variable most affected by other variables (In = 4) followed by exercise barriers (In = 3)