Health-related quality of life in abdominal wall hernia: let’s ask patients what matters to them?

INTRODUCTION: Quality of Life (QoL) is an important consideration in patients with abdominal wall hernia (AWH). What matters to patients and their everyday experience living with AWH may depend on a variety of personal, psychological, social and environmental factors. At present, no study has addressed what is important to this particular group of patients by asking the patients themselves. This study aims to determine QoL from the patient’s perspective by examining the lived experience in this patient population. METHODS: We interviewed 15 patients with AWH until thematic saturation. The patients were purposively sampled from AWH clinic between February 2020 and June 2020 using topic guides and interview schedules. Verbatim interview transcripts were coded and analysed using NVivo12 software and Interpretative Phenomenological Analysis (IPA). We adhered to consolidated criteria for reporting qualitative research (COREQ). RESULTS: Fifteen participants (8 men and 7 women) of age range 36–85 years, median 65 years, covering all Ventral Hernia Working Group (VHWG) grades. Five superordinate themes were identified each with several subordinate themes, as follows: (1) body image (subthemes—‘changes to perceptions of self’ and ‘fears concerning perceptions of others’). (2) Mental health (subthemes—‘emotional responses’, ‘disruptions to previously solid aspects of identity’, ‘developing coping strategies’). (3) Symptoms (subthemes—‘managing pain’, ‘freedom of movement’, ‘restriction and adaptation of function’). (4) Interpersonal relationships (subthemes—‘difficulties socially connecting’ and ‘changes in sexual relations’). (5) Employment (subthemes—‘financial pressure’, ‘return to work issues’ and ‘costs to family’). CONCLUSION: This is the first phenomenological qualitative study in the field of AWH and presents a rich account of what is important to these patients in terms of QoL. Developed from the patients’ own words, the themes are interrelated and should shape our understanding of patients with AWH. This study provides qualitative examples of each theme. This study has identified new themes (body image, interpersonal relationships and employment) that are not incorporated in existing AWH-specific QoL instruments. This is important for surgeons because the study suggests that we are currently not capturing all data relevant to QoL in this specific patient group with current tools. The wider impact of this would be to help counsel patients and support them more holistically through the disease process and it's management. Further research is needed to generate a standardised AWH QoL instrument which incorporates bio-psycho-emotional–social themes important to patients, as identified by patients. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10029-022-02599-6.