Exploring what is important to patients with regards to quality of life after experiencing a lower limb reconstructive procedure: a qualitative evidence synthesis

Abstract

Background Patient reported outcome measures (PROMs) are used to understand the impact of lower limb reconstruction surgery on patients’ quality of life (QOL). Existing measures have not been developed to specifically capture patient experiences amongst adults with lower limb conditions that require reconstruction surgery. This review aimed to synthesise qualitative evidence to identify what is important to patients requiring, undergoing, or following reconstructive surgery for lower limb conditions. Methods MEDLINE, Embase, PsychINFO and Cinahl were searched from inception until November 2020. Studies were included if they employed qualitative research methods, involved patients requiring, undergoing or following lower limb reconstruction and explored patients’ experiences of care, treatment, recovery and QOL. Mixed methods studies that did not separately report qualitative findings, mixed population studies that were not separately reported and studies in languages other than English were excluded. Included studies were analysed using thematic synthesis. The Critical Appraisal Skills Programme qualitative studies checklist was used to undertake quality assessment. Results Nine studies met the inclusion criteria. The thematic synthesis identified two overarching themes: (1) areas of living key to QOL for lower limb reconstruction patients and (2) moving towards a new normal. The way in which lower limb reconstruction affects an individual’s QOL and their recovery is complex and is influenced by a range of inter-related factors, which will affect patients to varying degrees depending on their individual circumstances. We identified these factors as: pain, daily functioning and lifestyle, identity, income, emotional wellbeing, support, the ability to adapt and adjust and the ability to move forwards. Conclusions The way patients’ QOL is affected after a lower limb reconstruction is complex, may change over time and is strongly linked to their recovery. These findings will aid us in developing a conceptual framework which identifies the outcomes important to patients and those that should be included in a PROM. Further research is then required to establish whether the range of factors we identified are captured by existing PROMs. Depending on the outcome of this work, a new PROM for patients following lower limb reconstruction may be required.

LIMB-Q Kids—German Translation and Cultural Adaptation

“…Collecting information about the effects of various treatment modalities on HRQL is thus important in order to inform patients and their next of kin. PROMs are indispensable in modern health care, because, if developed and validated in an appropriate way, they not only include the patients, but genuinely put them at the center, and measure what is important to them [ 4 , 23 , 24 , 25 , 28 , 29 ]. PROMs capture more important aspects than mere radiological or other objectively measured outcomes, e.g., joint range of motion, muscle strength, etc.…”

“…PROMs capture more important aspects than mere radiological or other objectively measured outcomes, e.g., joint range of motion, muscle strength, etc. [ 24 , 29 , 30 ]. The value of PROMs is highlighted by the fact that PROMs do not necessarily correlate well with radiological or other objectively assessed outcomes [ 31 ].…”

“…In adults, Leggett and co-workers are currently developing a PROM for limb deformity patients, called the PROLLIT study. Similar to the approach by the LIMB-Q Kids developers, Leggett et al, conducted a review to explore “what is important to patients with regards to quality of life after experiencing a lower limb reconstructive procedure” [ 29 ]. In comparison to LIMB-Q Kids, similar factors, such as ”pain”, “daily functioning” and “emotional wellbeing” can be found, but also additional domains, such as “income” being more relevant to adults.…”

“…In comparison to LIMB-Q Kids, similar factors, such as ”pain”, “daily functioning” and “emotional wellbeing” can be found, but also additional domains, such as “income” being more relevant to adults. A limitation of PROLLIT is the very specific inclusion criteria of “adults requiring, undergoing or following reconstructive surgery”, which excludes both children and other treatment options [ 29 ].…”

What is important to adults after lower limb reconstruction surgery: a conceptual framework

“…The PROLLIT (Patient-Reported Outcome Measure for Lower Limb Reconstruction) study aims to ascertain whether current Patient-Reported Outcome Measures (PROMS) used with Lower Limb Reconstruction (LLR) patients are fit for purpose and adequately capture outcomes that are important to patients, including the development of a new PROM if required [ 1 ]. A recent qualitative evidence synthesis (QES) of nine studies using thematic synthesis highlighted the paucity of research exploring the outcomes important to people undergoing LLR [ 2 ]; this QES has enabled the preliminary identification of domains for a conceptual framework for this group of patients.…”