A Focus Group– and Patient-Driven Study to Understand Patients’ and Health Care Providers’ Perspectives on Services for People with Amputation

Abstract

Purpose: This study investigates patients’ and health care providers’ perspectives on the services provided for people with amputation in Saskatoon. Method: We used a qualitative approach, following the Delphi method. A patient-oriented research team designed five questions and presented them to two focus groups. The discussions focused on what worked well in the health care system and what could be improved, what could be improved in the community, future research, and ways to improve specific knowledge translation regarding care of people with amputation to therapists. Results: The two focus groups consisted of 48 panellists, all community members and health care professionals. The themes that emerged included positive experiences with prosthetic care and the individual people responsible for amputee care and improvements needed to streamline the pathways of care, community support, education, and research into all aspects of amputation. Conclusions: Amputation is not just a one-time medical procedure; people with amputation need lifelong support from health care providers and the community. Clear pathways of care, access to immediate support, amputee-specific education for health care providers, better patient education, increased physical therapy, and enhanced resources and care were identified as areas in need of improvement. This study will, we hope, form the basis of future research to continually improve the quality of care and support for people living with amputation.

The prevalence of amputation in Canada is not well documented. A 2017 study reported the 2006–2011 age-adjusted Canadian lower extremity amputation incidence at 22.9 per 100,000 individuals, with Saskatchewan at 28.3 per 100,000 individuals over the same time period.¹ This incidence does not, unfortunately, account for upper extremity amputation or congenital amputation. The projection that the worldwide amputation rate will more than double by 2050 makes understanding provider and recipient perspectives on care an important objective.²

When an individual has an amputation, the path of care, including discharge disposition, may vary dramatically among patients on the basis of multiple factors, including, but not limited to, age, cause of amputation, prior function, medical needs, and availability of service. Only 18%–36% of patients with lower extremity amputation in Canada are discharged to in-patient rehabilitation.^1,3,4 Others are discharged to their home with services, to their home without services, to a long-term care facility, or to a short-term care facility. Patients who are discharged home after a major limb amputation typically fall into one of two categories: (1) those who are functioning independently at a high level – for example, those who are able to walk with an assistive device and perform all activities of daily living – and (2) those who are functioning at a very low level, who would not physically tolerate the demands of a rehabilitation programme.^1,5,6

Patients discharged home may receive nursing, rehabilitation, and wound care services in their home or in an outpatient facility. Lack of home service availability, such as seen in some rural locations, may delay hospital discharge or necessitate placement in a short-term care facility. In any case, discharge disposition must ensure that the patient has available resources to optimize outcomes, including the possible need for a prosthesis. As previously mentioned, discharge disposition takes into consideration age, cause of amputation, and prior function. People who experience traumatic amputations are usually younger and more physically able bodied than people who have amputations as a result of disease processes such as vascular disease, often in the presence of diabetes.^2,7,8 Such differences lead to varied functional outcomes and prosthetic and rehabilitation needs.

Currently, no research has been conducted on the experiences of or perceived differences in health care treatment plans for people with amputation in Saskatoon. This study aims to determine these patients’ needs and their satisfaction with health care practices. The specific objective of this study is to gain an understanding of the perspectives and experiences of patients, families, friends, and caregivers related to the health care received after amputation in Saskatoon and to determine whether patient and caregiver perspectives correspond with those of health care providers. To achieve our objective, we used focus groups consisting of individuals directly affected by amputation: people with amputation, family members, friends, and health care providers.

Gathering the perspectives and experiences of patients and health care providers directly, using qualitative methods, enabled us to understand population needs, information that is unobtainable through quantitative studies. This information will be used to increase our understanding of the services currently being provided, identify and diminish the gaps in care, and improve the services provided in the future. This study was conducted in collaboration with four organizations in Saskatoon – SaskAbilities, Saskatoon City Hospital, St. Paul’s Hospital, and Royal University Hospital.

The University of Saskatchewan Research Ethics Board declared that this article was exempt from review and approved our study on the basis of Article 2.5 of the Tri-Council Policy Statement.

Methods

Our methodology uses patient-oriented research, which incorporates a partnership of patients, families, friends, caregivers, health care providers, and researchers to answer questions and solve problems that are important to patients.⁹ Such a partnership is designed to identify topics of interest for research, conduct studies, and use the results to improve the health care system and overall care provided.¹⁰ As a result, we set up a multidisciplinary patient-oriented research team (PORT) to direct the study; the team represents the overall views and perspectives of the amputee community and works collaboratively to create, execute, and summarize research. The PORT consisted of 10 people: four individuals with amputation, the mother of a child with amputation, a prosthetist, a research physiotherapist, a physical medicine and rehabilitation physician, and a neuroscience PhD student.

The PORT discussed common themes related to health care experiences to create open-ended questions that probe for the similarities and differences in these experiences and to investigate community involvement. It wanted to gain a better understanding of what in the health care system was working, what needed improvement, how the community could help support the health care system, how to direct research to focus on what a patient wanted, and how to enhance the knowledge of amputee care among those professionals who interact with people with amputation the most. It developed five questions, each representing one of these key areas:

1. What works well in the health care provided during the amputation process?

2. What could be improved as far as the health care system or health care provided is concerned?

3. What can we do as a community to enhance support for people with amputation?

4. Do you have suggestions for topics for future research?

5. What information would you like physiotherapists and occupational therapists to know to better treat people with amputation?

The PORT then designed a method for collecting and categorizing the responses and reporting the most important findings. It discussed the methodology for facilitating the focus groups and decided that the best way to enhance participation, encourage an environment that supported sharing personal experiences, and allow for iteration and clarification was to follow the Delphi method.^11,12

The original Delphi method was designed to gain concise opinions from groups of experts using multiple rounds of questionnaires.¹³ It has four main characteristics: (1) the questions are repeated over two or more rounds, allowing the experts to reconsider their responses; (2) the participants are anonymous to avoid being influenced by the others; (3) feedback is facilitated using a controlled approach; and (4) all responses are included in the final answer.¹³ The Delphi method is a well-established technique that is easily modified to meet the needs of individual studies.¹²

The PORT scheduled two focus groups and, for each one, used purposive sampling to gain understanding and perspective of the key areas. PORT members, with expertise in the topic under study (expertise, as defined by Adler and Ziglio, includes knowledge of and experience with the subject matter being studied¹⁴) moderated each focus group. Moderators included two authors of this article (KLC and AZL), familiar to the participants as founders of the community support group for people with amputation, and two PORT members (one young person with upper extremity amputation and one older person of Indigenous heritage with amputation as a result of vascular disease) moderated each focus group. The moderators collected the written responses of each participant (panellist) and took detailed notes throughout each meeting.

Two rounds of discussion were held in each focus group. In Round 1, we asked the panellists the five questions and asked them to write down their responses. The panellists were encouraged to reflect on their personal experiences and consider the general implications of overall care. Using written responses not only encouraged feedback from those individuals not readily willing to verbally share their thoughts in a group but also provided the PORT with transcribed testimonies from every panellist for analysis. To clarify understanding, one moderator then guided a discussion based on each theme, with a second moderator taking supplemental notes based on the communication.¹² Written responses were then collected, shuffled, compiled, and opened to further discussion. Unlike the goal of the original Delphi method, the goal of the PORT was not to have the experts achieve consensus but to gather complete, informed experiences and perspectives regarding patient care.

In the second round of discussion, the moderators summarized the findings from Round 1, then opened up the floor to group discussion so that the panellists were assured that the moderators understood their responses and were able to clarify and revise them as needed.

When the focus groups were finished, the written information, along with the supplemental notes, were presented to the PORT. The PORT augmented the information obtained with their own personal experiences and prioritized each general response by analyzing the number of times multiple panellists had given a similar response to the same question.

Results

The first focus group was made up of 28 individuals directly affected by amputation: people with amputation and friends and family of people with amputation. The time since amputation ranged from 3 months to more than 50 years. The panellists had various levels of amputation, cultural background, and socioeconomic status. The second group consisted of 20 health care providers: physicians, surgeons, physiotherapists, occupational therapists, nurses, and a prosthetist who provided care specifically to people with amputation. The health care providers represented a range of experience and professions directly involved in the care of people with amputation. The focus groups were held at SaskAbilities and Saskatoon City Hospital. Each session lasted roughly 2 hours.

What works well

The responses to the first question, “What works well?” fell into the following themes: prosthetic care, multidisciplinary coordination, and hospital professionals.

Prosthetic care

Both the patient and the health care provider focus groups identified prosthetic care as the top theme of what worked well and as the most positive component of amputee care in Saskatoon. Almost all costs are covered, which was considered a huge benefit to patients. Provincial government insurance covers a certain amount of prosthetic costs, more than any other province; however, if patients want something above and beyond that, they are responsible for some of those costs – such as the cost of different prosthetic legs for activities or adaptive componentry for hobbies (e.g., new suspension systems). In addition, those with amputation believed that the prosthetic department at SaskAbilities was a great resource and that the prosthetists were well educated and available in a timely manner to handle all prosthetic-related needs, including adjustments, which were the needs most commonly identified.

Multidisciplinary coordination

The panellists said that communication among all members of the multidisciplinary care team during the amputation process led to a more positive care experience and better outcomes. The patient panellists did not have to explain their situation to each and every new doctor. The amputee clinic at Saskatoon City Hospital was identified as being concerned with the whole person, not just the amputation, providing more information and doing a better job of following up with patients. Also, the interdisciplinary team at each clinic visit – the physician, nurse, prosthetist, physiotherapist, and research members – was beneficial to post-amputation care.

The health care provider panellists supported these findings by reporting the efficiency and ease of transitioning patients through the different levels of care after amputation. Communication was critical to ensuring a timely recovery and providing the highest quality of care. In addition, patients’ outlook was greatly affected by the congruity of the amputee team assigned to them.

Hospital professionals

Overall, interaction with hospital professionals was positive. Nurses were mentioned most often: they had a positive attitude, were personable, and provided as much support as they could, especially on the surgical and rehabilitation wards. Physiotherapists were helpful because they attempted to answer all the patients’ questions, or at least find the answers for them, and provided them with referrals to city programmes. Of specific mention was the team of health care professionals available to patients at the amputee clinic at Saskatoon City Hospital.

What could be improved

The things that could be improved included the pathway of care; access to support; increased education for people with amputation, family members, and those directly caring for people with amputation; increased physical therapy provided through SaskAbilities; and additional and updated resources for people with amputation. One immediate improvement that was discussed involved the current information handout given to all new amputees, which is outdated and shows pictures that are not representative of patients – for example, one picture shows a very young man with a unique amputation (rotationplasty).

Improved pathway of care

The most discussed area of improvement was improving the pathway of care for people with amputation in Saskatoon. Many patient panellists discussed how long the process took, with some waiting up to 6 months before attending the amputee clinic and receiving their prosthesis prescription. Once fitted with a prosthesis, they described wait times of an additional 1–3 months before beginning physical therapy to be taught how to use the device – if they received therapy at all. These gaps concerned both the patients and the health care providers because postoperative complications such as contractures, sedentary behavior, and weakness affect quality of life and ultimately physical function, especially among people who have major pre-existing health problems.¹⁵

It was apparent not only in the patients’ accounts but also in those of the prosthetists that patients are falling through the cracks and not receiving the care they need, which negatively affects outcomes. Although not substantiated, one panellist stated that there were roughly 200 new amputations a year in Saskatchewan, and yet only about 75 people with amputation were being seen by a prosthetist. To address this, the panellists suggested increasing the amount of physician follow-ups, “even just a phone call every so often to see how things are going.” They also suggested that an amputee team be established to follow patients from preop through the rest of their lives, thereby ensuring continuity of care and proactive provision of care as well as giving people with amputation a direct contact to ask questions. In addition, the panellists agreed that there appeared to be no uniform guidance for stump management or pain management. It was clear that immediate postoperative residual limb care varied among patients.

Access to immediate support

The next prominent concern was the lack of immediate support provided to people with amputation. There are no support groups, no peer supporters, and no access to emotional counseling. The panellists were adamant about the need for a peer support system, one that would connect new amputees to other individuals in a similar situation. One panellist said, “It’s hard to listen to and believe a person with two good legs telling you everything will be okay.” The health care providers stated that they did not have any contact names to give to new amputees, and they believed that community support would dramatically enhance the recovery process. Moreover, many panellists described frustration when trying to obtain peer support; the national amputee organization did not appear responsive to requests for peer visitors. Finally, online patient information was not comprehensive, leaving many people with more questions about ideal practices.

Increased education

The panellists also identified the need for increased education for patients, families, and health care providers. Topics included identifying the technology available, what the healing process should look like, what the steps were for maximizing function after surgery, whom to contact with questions, what nutrition was needed, what families should expect, what the roles were of all the people involved in care, and what activities were available for people with amputation in the community. Many patient panellists thought they had not received enough education on the pathway of care, including what the amputation process would be like, how long healing would take, and how their body would change to adapt to the amputation.

The panellists were also unaware of the general steps of care and who was available to assist in these steps. One participant said that she or he was “still not sure what exactly a physiatrist does” and believed that more education about the players involved in care would be greatly beneficial. Although our focus groups included very few First Nations individuals, education was among the most important topic they brought up. The panellists suggested that the First Nations population would benefit from education about diabetes and preventing amputations, exercise programmes for before and after amputation, and how to cope after the amputation.

Increased physical therapy

All the panellists agreed that the amount of physical therapy they received was insufficient. Many patient panellists explained that after surgery they were discharged home with many discharge papers, including a handout of exercises. Very few reported receiving outpatient therapy; the lack of such therapy could lead to flexion contractures and diminished strength, which has a direct impact on the successful use of a prosthesis. Moreover, those patients who received a prescription for therapy had difficulty obtaining a timely appointment and then were seen for only a few visits. Some panellists mentioned that it would have been beneficial to their overall well-being if they had had access to physical therapy after receiving new prosthetic componentry or experiencing health problems that had set them back. The panellists living in rural areas also said that a patient’s ability to be seen by a physical therapist was almost impossible, and if they were able to see a therapist occasionally, most did not have experience with the specific needs of people with amputation.

Enhanced resources

The final suggestion was to enhance the resources and care provided through SaskAbilities. As discussed earlier, the panellists had found that the prosthetics department provided timely appointments and positive support. Although the consensus was that SaskAbilities was doing a good job, the panellists thought it would benefit from expanding to include allied health professionals at the same location – for instance, a physical therapist – so that people with amputation could work directly with both the prosthetist and the therapist. Both parties should work together, especially in the first few months after a patient has received a new device “to work out the kinks and make adjustments as needed,” as stated by a member of the focus group. Another enhancement would be to provide an in-house nurse who would be able to answer questions that arose during appointments, particularly quick ones that may not require booking an appointment. This would give patients a convenient, quick avenue for direct and relevant support.

How to enhance support as a community

Fortunately, many of the items brought up during the discussion of improvements that were needed also fell into the category of how to enhance support as a community. The panellists felt very passionate about needing a peer support programme and an established support group. A peer support programme would allow new amputees to be matched with an established amputee in a similar situation. The support group, the panellists hoped, would hold frequent meetings, remain informal, invite guest speakers to discuss topics important to all amputees, be inviting for both adults and youths, set up community trips, provide a newsletter, and most important connect amputees with each other. Finally, the panellists wished that there were more education for the community about amputation, especially for children. Many children with amputation have a hard time at school or in social settings because of the general lack of knowledge about amputation; this is also true for many adults in different settings.

Topics for future research

The fourth question for the focus groups was about future research; it allowed the PORT to gather community perspectives and learn about the research currently being conducted in Saskatoon. Unfortunately, current research is not readily available to the amputee population. There is a lack of resources for disseminating information about innovative technologies, including prosthetic componentry and its indicated use, and this information is not reaching the level of the general consumer.

The panellists in both focus groups identified a wide range of research topics: pain and pain management; ways to diminish phantom limb pain without medication, especially among children; more research on prosthetic devices, specifically suspension systems for those with short residual limbs; comparing running blades with regular legs; and “brain-controlled feet and sockets.” Psychological studies comparing mental well-being with physical well-being were also suggested. The panellists wanted to see investigations into the physiological changes that occur after amputation and how to minimize bone regrowth as well as research into the effectiveness of a functioning support network; this would go beyond providing the typical health care support to see whether overall outcomes were improved in the population with amputation.

Information for therapists

Many of the patients with amputation who visit the four institutions in Saskatoon under discussion live in rural areas with limited access to rehabilitation services. Those fortunate enough to be seen by a therapist are often the therapists’ first patients with amputation. Without specific amputee education, including prosthetic function and componentry function (e.g., new suspension systems), treating an amputee for the first time can be stressful.

The panellists agreed that it would be beneficial to have provincewide physiotherapy guidelines for amputee care, which should include standards of care, stump care, pain management, and standardized exercises for each level of amputation. The panellists also identified a need for physiotherapists to receive more specific education on prosthetic componentry so that they could better help people with amputation learn how to control their devices. Another area that the panellists felt strongly about was preventing overuse injuries in the sound limb. Finally, the panellists believed that therapists needed to have a better understanding of phantom limb pain and its impact on overall physical and mental health.

Specific feedback from the health care focus group

In addition to the questions asked of the patient focus groups, the PORT thought it was necessary to ask specific questions of the health care providers who worked directly with people with amputation. It inquired whether they had observed gaps in care or recognized the need for patient input in their system and asked for their thoughts on the state of overall care for the population with amputation. This discussion was open ended, with minimal input from the moderators, thereby allowing the panellists to direct the conversation.

The first and most pressing issue brought up by the health care providers was the lack of a clear pathway of care. Many of the panellists were unaware of what happened when a patient was discharged from their care or of the timeline of care. For example, one acute care physiotherapist did not realize that it could take months for a patient to be seen in the amputee clinic. This realization triggered an immediate change in attitude toward the continuity of care: the health care providers agreed that rehabilitation services should be ordered for all patients discharged home after amputation. They also agreed that the best way to improve care would be to standardize their practices and provide patients with a specific care rubric after or, if possible, before amputation.

The health care providers admitted that they had received inadequate education about the treatment plans for all levels of amputee and agreed that a standardized pathway of care would benefit them as well as the people with amputation. They believed that webinars, or additional course offerings that provided education about the care of people with amputation, would benefit the entire province, especially those therapists working in rural settings. Overall, the comments and concerns of the health care providers mirrored the concerns of the patients.

Discussion

In this study, we set out to gather the direct perspectives of people with amputation and family members, friends, caregivers, and health care providers affected by amputation. Engaging people with amputation and other community members can positively direct health care initiatives, reveal areas in need of improvement, and help create impactful research projects. Fortunately for our study, both focus groups (patient and health care provider) revealed similar findings. The PORT, a mix of people with amputation, family, friends, and health care providers, was able to discuss the information collected from the groups, relate it to their personal perspectives, and confirm and provide supporting information for the perspectives and experiences expressed in the groups.

The results from the focus groups show that patients and health care providers alike believed that services related to prosthetic care were among the best-functioning services provided to people with amputation in Saskatoon. Satisfaction with prosthetic services is an understudied area and needs more national and international research using tailored questionnaires;¹⁶ however, one 2009 study found similar satisfaction to that reported by our experts. It identified high satisfaction rates for prosthetic and orthotic care in the Netherlands, hypothesizing that not only services but also satisfaction with devices played a critical role in satisfaction rates.¹⁶

Although the individual health care providers responsible for amputee care are positive, skilled, and personable, improvements need to be made in the general pathway of care to benefit both the patient and the providers. The focus groups believed that this should be accomplished using a standardized method for both the patient and the family as soon as possible. Community support, delivered through peer visitor programmes and a structured support group, was also identified as a crucial need for the amputee community. This need is supported by a 2018 integrative review of published peer support programmes (for individuals with amputation, which, although it was limited to only 10 studies, found that community support groups have a positive impact on people with amputation.¹⁷

Enhanced education for patients about the amputation process, the healing process, prosthetic componentry, and who to contact for different purposes was identified as an important need. Fortunately, this can be accomplished by developing new material for people with amputation, inviting speakers to a support group, and further educating health care providers directly involved in the care of people with amputation. Education for health care providers can be delivered at weekend seminars or webinars available throughout the province. Research into the effectiveness of an amputation team may show that further resources are needed to enhance the overall quality of life of people with amputation in Saskatoon. In addition, researchers should focus on pain management, the person with amputation as a whole (physical and mental well-being), and prosthetic innovation.

This study had several limitations. First, although we collected patient, friend, family, and caregiver perspectives as well as health care provider perspectives, we did not gather much input from people with amputation of Indigenous heritage; gathering further insight into their experiences would strengthen the research dramatically. Second, the study was small, and it would have benefited from collecting input from additional people in Saskatoon affected by amputation, especially those living in rural areas. However, each group itself was rather large (20–28 people), which may have inhibited participants’ ability to fully express their opinions. Third, a broader, unified study investigating the perspectives and experiences of care provided to people with amputation in other areas, both in Canada and in other countries, would greatly benefit the overall continuity of care provided. Such studies would allow a greater investigation into what does and does not work, based on the personal experiences of people with amputation in each location. Many similarities may be found regardless of location, although differences in health care systems may have a big impact on perspectives.

Conclusion

This study set out to explore patients’ and health care providers’ perspectives on health care for people with amputation in Saskatoon. No prior studies have investigated the positive and negative experiences of people with amputation throughout the process of health care delivery. Previous studies focused solely on rehabilitation outcomes or prosthesis satisfaction rather than the complete process.^18–21 This study could lead to future qualitative research into the amputee community and the entire health care process as well as possible initiatives for enhancing lifelong care. We learned that it is crucial to engage patients to inform health care providers about the ways to improve care, direct research, and approach changes in a system that is meant to benefit the patient.

Key Messages

What is already known on this topic

The rate of amputation is expected to drastically increase in the coming years; this will affect not only individuals but also health care systems generally. Overall function, specifically the desire to walk after lower limb amputation, and quality of life are among the major concerns of people affected by amputation. The health care system provides services to improve function, but little is known about patients’ perspectives on the specific care they have received and the specific needs of the population with amputation.

What this study adds

This study identified the needs of both patients and health care providers to improve the quality of life and function in people affected by amputation in Saskatoon. Lifelong support, whether through the health care system or the community, was identified as a primary need. Answering this need involves understanding the pathway of care, improving the continuity of care, and enhancing community outreach and services. The lived experiences of everyone in a community affected by amputation and the challenges that each group faces in the health care system and the community in general will help inform changes, enhance services, and drive future research initiatives.