Abstract

Background: Health-related quality of life (HRQOL) is affected for many years following cancer treatment. With an increasing number of long-term cancer survivors, HRQOL will be a key concern in the future. There is a lack of qualitative studies investigating long-term cancer survivors’ needs and experience of late effects and HRQOL. Objective: The aim of this sub-study is to describe cancer survivors’ own experience of late effects affecting HRQOL six to eight years after diagnosis. Methods: We used a qualitative methodology with semi-structured focus group interviews to gain an in-depth understanding of participants’ experience of their HRQOL. Interviews were audio-recorded, transcribed and analyzed using thematic analysis. Results: All of the participants reported late effects at some point after the treatment. Some of the experienced late effects had improved over the years, while the late effects mentioned in this article were still prominent six to eight years after the diagnosis. They described, among others, late effects such as reduced physical strength, cognitive difficulties, lack of energy and increased sensitivity. The participants described the late effects as bearable, but still affecting their HRQOL by limiting their activity level, their ability to work and their social interactions. Conclusions: Six to eight years post-treatment, cancer survivors still experienced physical and cognitive late effects affecting their HRQOL. The findings indicate that some late effects affect HRQOL for a long time. To prepare cancer survivors for post-treatment life and to optimize their HRQOL, they need information concerning potential late effects before, during and after cancer treatment, as well as support services and follow-up in the municipalities.

Highlights

  • The number of cancer survivors is growing steadily due to early detection and advances in multimodal treatment, and this increase is expected to continue worldwide [1] [2] [3] [4]

  • Some of the experienced late effects had improved over the years, while the late effects mentioned in this article were still prominent six to eight years after the diagnosis

  • The findings indicate that some late effects affect Health-related quality of life (HRQOL) for a long time

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Summary

Introduction

The number of cancer survivors is growing steadily due to early detection and advances in multimodal treatment, and this increase is expected to continue worldwide [1] [2] [3] [4]. Survivors may experience physical late effects such as osteoporosis, hypertension, heart failure, diabetes, chronic pain, endocrine dysfunction, sexual dysfunction and/or secondary cancers [4] [5] [6] [7]. These late effects may restrict activities of daily living, employment, social life and family life, and lead to loss of independence and confidence [8] [9]. To prepare cancer survivors for post-treatment life and to optimize their HRQOL, they need information concerning potential late effects before, during and after cancer treatment, as well as support services and follow-up in the municipalities

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