Type of participants.

Studies that reported on adults (≥18 years) with PAD were included. Studies were included whether there was a diagnosis of PAD, or PAD was stated or confirmed as the underlying cause.

Types of studies.

Studies on self-reported accounts of patients’ experience of being diagnosed and treated for PAD were included if published in English and reported primary data. Also mixed-methods studies were included if they reported the qualitative results separately. Survey only or hypothetical data studies were excluded. Studies published only as abstracts were excluded.

Identification of primary research studies.

The search aimed to find only peer review published studies. A systematic search was conducted until September 2017 (Updated in February 2018) in six databases (CINALH via EBSCO, PsyclNFO via Ovid, MEDLINE via Ovid, AMED via Ovid, EMBASE via Ovid, Social citation index/Science citation index via Web of Science (WOS)) and directory of Open Access repository websites by the first author (UA). The SPIDER tool [8] was used to organise the research questions and the search blocks. The search strategies were adapted to each database specific search syntax, filters, limiters and Boolean operators. Generally the following key words were used: Peripheral arterial disease OR Peripheral vascular disease OR Peripheral Occlusive disease OR Intermittent claudication OR Claudication pain AND Quality of life OR Life experience OR Lived experience OR Patient reported experience OR Patient experience OR Experience of living OR Experiences OR Illness beliefs AND qualitative OR mixed-methods. Reference lists of identified studies were also searched. A sample search strategy is presented in the supporting information (S1 Fig). The identified studies were imported to Refworks and duplicates removed. Studies were then exported to excel. Titles, abstracts, and the full text of selected studies were independently screened by two authors (UA, EE) using the previously defined eligibility criteria. Differences of opinion regarding inclusion or exclusion were resolved by discussion and reaching consensus between the two authors (UA, EE), or in consultation with a third author (CS) when warranted.

Patients’ experience of diagnosis.

Patients’ experience of diagnosis summarises reports of patients’ experience of symptoms presentation, diagnostic processes, pre-treatment processes including consultations, and processes involved in making decisions about treatment. The emerging themes reflect patients’ feeling of leg pain, fatigue and other discomforts, which later became a burden, resulting in walking impairment, loss of independence and control. Patients described a common first experience of symptom of PAD as pain while walking usually beginning as a slow, creeping feeling of fatigue which gradually developed into pain and cramp[11–14,16–18,20]: “just like somebody gripping the calf muscle really tightly”, “crippling”, “stops me in my tracks”, and having a “wearing effect”[18]. Although the pain increased or became more frequent[15,16],patients initially dismissed symptoms as trivial[15,18], and sometimes thought it was a sign of old age[15,17]: “I never complained [to the doctor] because I didn’t think I had a complaint[15].

Symptom progression saw the pain and discomfort began to wear the patients down[11,15,16,18], often bringing embarrassment when they had to stop in the middle of the road to let the pain go away[10,11,16,17]. In addition to walking impairment, patients reported impairment in other aspects of physical functioning, feeling restricted and a loss of independence[12,14–17,20], which had a major impact on several aspects of their quality of life[11–13,15,18] including pleasure[16], social life[12,20], recreation[16], and sleep quality[20] for those with rest pain. Patients interpreted this as a sense of burden, powerlessness, isolation, and compromised independence: “Yes, it’s just like it has taken the strength and power from me…, you have to do this and that but you can’t … You have to give up”[20]. Although unsuccessfully, patients attempted to deal with their symptoms by taking pain medication, avoiding or altering their activity, taking slow steps or walking short distances[13,15–17,20]. Patients also demonstrated a limited understanding of their disease[11,14,17,18]: “I thought I had a muscle injury”[18].

There was substantial delay in diagnosing the condition, and getting treatment. The first component of the delay was patients initial dismissal of their symptoms for lack of knowledge about the disease[17–19], and consequent delay in seeking medical help[17,18]. Even when medical help was sought, many patients were frustrated at the time and effort required to gain definitive diagnosis[18]. “I ended up going to different doctors before I got to one that put his finger on the vascular end of it.…went through quite a little stuff for 3–4 years before I finally got the guy that said ‘You haven’t got any circulation”[18]. When eventually diagnosed, patients discussed receiving little attention and follow-up and had strong perception of lack of empathy or awareness of them as a person on the part of the healthcare professionals ‘‘When I actually got diagnosed, I was there 10 minutes, then it was this, this, this and that, right you’re discharged, that’s it, go”[17]. Patients desired specific information about their disease but reported a sense of being left alone with little specific information or advice. ‘‘I mean everything I’ve got I want to know about, and you don’t get to know, simple as that, you ask and you don’t get a full explanation”[17].

Generally, patients were passive in the treatment decision-making process and assumed that healthcare professionals to be competent, knowledgeable and acting in their best interest. “The likes of [surgeons], they know what they are talking about they don’t say things unless they are sure so I accept what they want to do”[15]. So when surgery was decided, patients had unrealistic expectations that surgery would solve all of their problems[15]. Walking was an overlooked first-line treatment strategy. Even when healthcare professionals had advised patients with IC to walk, patients did not consider it as a treatment. “There’s no treatment. I’m getting no treatment, not for this. I’m getting advice, and the advice is ‘try to walk through it’. That’s the only advice I’ve ever had”[10]. Similarly, regarding other lifestyle modification and risk factor management, although patients have been told about the risk of smoking, majority of patients did not understand the systemic nature of their disease or wider atherosclerotic risks. “I am a healthy person. I rarely suffer from something serious. No scary diseases and. no heart disease or whatever”[23].

Experience of undergoing surgical treatments.

Patients’ experience of surgical acute care described surgery and other acute care interventions. Emerging themes reflected deficiency in the acute care orientation of surgical interventions for PAD. Patients discussed feeling relieved yet uncertain, and reported difficult understanding the technical language typically used by their surgeons[17,19,22]. Typical aspiration was for knowledge and information on self-management when returning home after surgical intervention but patients described receiving little, non-specific, or mixed information, often with no written material to take home[17,19,22], even when requested[19]. “It might be good to receive some of the information during the hospital stay because you have to wait quite a lot…”[19]. Not receiving specific information made patients confused and uncertain[19,22] and they interpreted it as lack of empathy[17].

Irrespective of the disease stage at the point of surgical intervention, patients described lack of information about their post-operative health and, for instance how to deal with the “nerve damages” and swelling[22]. In addition patients spoke about being discharged with insufficient knowledge about their disease and the importance of risk factor management. Hence patients lacked clear and specific understanding of how to effect important behaviour change (e.g. walking exercise) to reduce risks and/or improve symptoms[15,22]. Due to the short time of consultations and lack of clear information, patients reported not being able to get their questions answered by their health care professionals[19,22] but had resorted to other sources outside medical contact, including the internet, friends and family members, to gain knowledge about their condition[17,19]: “…and you don’t get to know, simple as that, you ask and you don’t get a full explanation”[17]. This uncertainty and lack of understanding led to many patients avoiding walking for fear of causing damage[22]

Patients experience of conservative treatments.

Patient’s experience of conservative treatment relates to experience with walking treatments (and lifestyle modification), their perspective of walking treatment for PAD or walking behaviour after revascularisation. Emerging themes indicate many patients with IC do not consider walking exercise as important self-management opportunity either as first-line therapy or after undergoing revascularisation[10,11,17,22] This was either due to patients’ trivialisation of symptom[10] or feeling of powerlessness, frustration by the severity of their symptoms[10] or just lack of motivation to walk[17]. In addition lack of specific and tailored walking guidelines meant that patients had varied outcome expectations, and limited purposeful walking for exercise, and were easily overcome by barriers to walking to intensity[10,11,17,22]

Patients described experience of SEP for IC as “friendly,” “relaxing,” and one that gave them a “feeling of all being in it together”[11]. Completing SEP provided patients with structure and reassurance regarding safe and effective dose of walking[10], however, patients described comorbidities, leg pain, lack of motivation and lack of time, and the required commitment needed to attend 3x/week as barrier to participating in SEP[10,11,17]. In addition, they discussed that attending SEP did not aid them to walk independently in their community[10]. Patients however noted that symptom improvement following walking exercise encouraged them to go on[10]. Similar to acute surgical care treatments, a resonating theme among patients regarding walking was their desire for specific and tailored information, guidance and support to achieve the walking recommendations, and the lack of these in much of the walking advice received.

Patients’ post treatment experience.

Patients’ post treatment experience intended to capture patients’ experiences in the short period (≤ 6 months) post-surgical interventions or conservative management, during which patients experienced rapid changes to their symptoms and learnt to navigate these changes. However, no study reported on patients’ experience of living with PAD post-conservative treatments. Emerging themes of post-surgery experience reflects the feeling of becoming better but not cured, gradual emergence of uncertainty, and fear, and then patients’ attempts to recapture control of their life.

Undergoing surgical interventions provided patients with temporary pain relief enabling them to walk unaided again, and to sleep well for patients with CLI[21]. With an unrealistic expectations that surgery had “cured everything”[23], patients focussed solely on this symptom relief, believing PAD to be acute and treatable, rather than a chronic condition which necessitates self-management[22]. However, the high hope of recovery progressed to disappointment over unmet expectations when symptoms remerged and/or other existing ailments began to unravel[21,22]. This highlights a continued lack of understanding of the aetiology and the systematic nature of PAD even when patients’ had undergone surgical interventions[19].

Patients discussed not receiving adequate information when returning home from surgery and were soon bothered with several questions. To them their major source of information and support is from consultation with their surgeons but this did not provide them with a good understanding of their disease[22]. They continued to be unclear about the systemic nature of their condition, and how to translate lifestyle change into managing their condition[23]: “But in some cases it would help if you could all calm down a little when you are talking to us. I have met doctors who say hmhmhm and you notice that they are stressed and then you have no further questions…”[19]. In the context where surgery was expected to be a complete cure, the return of claudication pain and cramps assumed greater significance[15,21,22] and patients were soon overtaken with feelings of uncertainty, and coming to an end point[21]: “It’s just the odd pain that frightens me… I say oh God I hope it’s not happening again”[15]. This marks a point where patients would be forced to accept the chronic nature of PAD.

Long term experience (Adapting to the “new normal”).

This captures the long-term experience of living with PAD, during which patients start adapting to disease limitation, and learning alternative strategies to maximise living including reappraising meaning in life. Although many patients have started coming to terms with the fact that they have a chronic condition, they continue to lack understanding of the disease in terms of the broader atherosclerotic risk. Patients were more bordered about their chance of going back to surgery or being offered one if they need it, than the risk of stroke and broader cardiovascular events[22]. The majority have accepted that they will always be dependent on help and support, but felt frustrated and helpless at having to watch their role being taken over by spouses and children[21].

Patients discussed their resolve to begin adaptation to their physical limitation, and adjusting their outlook within their limited activity and deteriorating health[15,16,21,22]. “I don’t go down, sit in a corner, and cry every day. That wouldn’t make it any more fun”[21]. Often a complex process, patients expressed mixed feelings and varied ability to make this adaptation[18], often requiring them to reorient life, and accept with resignation the fact of giving up some important things including hobbies, leisure, and social life[20,22]. For many, there was a feeling of being forced to reappraise the meaning of life and to develop a new value in order to make the best of their situation. “But to fully accept it is hard, you can put it out of your mind for a while but then the thoughts come again, why you can’t walk properly”[21].

Patients began to learn how to live with the remaining circulation problem in the leg and are more moderate about their expectation[21]. “Yes, I suppose you think less and less about it and realise that you’re like this and it doesn’t seem like it’s going to work out much better”[21]. To remain fairly active within the restriction placed by PAD, patients had begun to walk more slowly and to sit down instead of standing for gardening[21].