PAINSTORIES – Exploring the Temporal Developments in the Challenges, Barriers, and Self-Management Needs of Adolescents with Longstanding Knee Pain: A Qualitative, Retrospective Interview Study with Young Adults Experiencing Knee Pain Since Adolescence

Johansen, Simon Kristoffer; Holden, Sinéad; Pourbordbari, Negar; Jensen, Martin Bach; Thomsen, Janus Laust; Rathleff, Michael Skovdal

doi:10.1016/j.jpain.2021.10.006

Cited by 17 publications

(27 citation statements)

References 54 publications

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“…The response shift illustrates individual capacity to adapt to their context (i.e., acceptance of pain), shifting focus away from one cannot (for now), to what they can do to exert control of pain in their current situation 43,45 . This aligns with qualitative evidence where some adolescents with CMP ascribe that enhanced knowledge of pain legitimize self-management behaviors that makes it easier to accept limitations, justify actions to other peers, prioritize new life goals and thereby accomplish satisfactory level of perceived QoL 8,14,15,38 . The temporal and adaptive nature of this phenomenon may explain why perceived QoL differs from other outcomes in the long-term 45 .…”

Section: Discussionsupporting

confidence: 70%

“…Some adolescents with a lived experience of CMP ascribe positive changes in understanding of pain (i.e., pain as non-threatening) as important contributors towards their recovery 8,15,17 . Johansen et al recently showed that the individual perceptions of ‘why do I have pain’ (i.e., functional theories) are strong drivers of behavior in young adults with non-traumatic knee pain underlining that knowledge about their condition is important 14 . Adolescents with more knowledge about causes of their pain, also showed increased ability to accept, cope and control their knee pain 14 .…”

Section: Discussionmentioning

confidence: 99%

“…Johansen et al recently showed that the individual perceptions of ‘why do I have pain’ (i.e., functional theories) are strong drivers of behavior in young adults with non-traumatic knee pain underlining that knowledge about their condition is important 14 . Adolescents with more knowledge about causes of their pain, also showed increased ability to accept, cope and control their knee pain 14 . This helped them to adjust their perceived QoL and may explain why QoL is associated with prognosis 12,14,17 .…”

Section: Discussionmentioning

confidence: 99%

“…Measures of QoL have been suggested as a proxy for current state in life in relation to self-evaluated health and therefore, prone to significant change in meaning over time 39,45 . Adolescents’ preferences and goals change over the course of time and are highly dependent of the perceived stage of rehabilitation 14,15,46 . Sprangers and Schwartz describe this phenomenon as response shift ; a result of changing personal norms, values, or conceptualizing on QoL throughout the course of a condition 43,45 .…”

Section: Discussionmentioning

confidence: 99%

“…Adolescents with more knowledge about causes of their pain, also showed increased ability to accept, cope and control their knee pain 14 . This helped them to adjust their perceived QoL and may explain why QoL is associated with prognosis 12,14,17 . Combined with our findings, it might suggest that these psychological aspects, such as negative beliefs about pain play an important role in rehabilitation for adolescents.…”

Section: Explanation Of Findingsmentioning

confidence: 99%

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Quality of life in adolescents with chronic non-traumatic knee pain: An analysis of 323 adolescents with Patellofemoral Pain and Osgood-Schlatter Disease

Djurtoft

Yona

Roos

et al. 2023

Preprint

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IntroductionWe aimed to describe Quality of life (QoL) among adolescents with Patellofemoral Pain (PFP) and Osgood-Schlatter Disease (OSD) according to the QoL subscale of The Knee injury and Osteoarthritis Outcome Score (KOOS) and the EuroQol 5-dimensions (EQ-5D) and to investigate the characteristics associated with QoL.MethodsThis individual participant analysis included data from three clinical trials on adolescents diagnosed with PFP or OSD. We relabeled individual data and constructed a single dataset.ResultsWe included 323 adolescents with PFP or OSD. Total score of KOOS-QoL was 51±18 and total index score for the EQ5D was 0.67±0.21. KOOS-QoL subscale showed that 59% reported being aware of their knee problems daily or constantly, 37% reported severe to extreme lack of confidence in their knees, 27% reported severe to extreme difficulty with their knees, and 20% reported severely or totally modifying their lifestyle to avoid potentially damaging activities to their knee. EQ-5D showed that 77% experienced problems with everyday activities, 47% reported mobility problems, 17% felt worried, sad, or unhappy, and 7% reported problems looking after themselves. Older participants (age 17-19) reported worse QoL than younger participants. None of the other characteristics were associated with QoL.ConclusionsA high proportion of adolescents with chronic non-traumatic knee pain experience low QoL. More than half were aware of their knee problems at least daily, one in three reported a severe lack of confidence in their knee, and one in six felt worried, sad, or unhappy. QoL was lowest among older adolescents.Highlights-One in every three adolescents with PFP or OSD reported a severe lack of confidence in their knee.-Many adolescents reported being sad or worried, and modified their usual activities due to their knee pain.-Clinicians may extend the scope and include pain management strategies to address psychological perspectives when managing adolescents diagnosed with PFP or OSD.-Modifiable targets such as adolescents understanding of pain may be a beneficial management strategy to consider in rehabilitation for PFP or OSD.

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Section: Discussionsupporting

confidence: 70%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Explanation Of Findingsmentioning

confidence: 99%

See 3 more Smart Citations

Quality of life in adolescents with chronic non-traumatic knee pain: An analysis of 323 adolescents with Patellofemoral Pain and Osgood-Schlatter Disease

Djurtoft

Yona

Roos

et al. 2023

Preprint

View full text Add to dashboard Cite

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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

France,

Uny,

Turley

et al. 2023

Cochrane Database of Systematic Reviews

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How do we explain painful non‐traumatic knee conditions to adolescents? A multiple‐method study to develop credible explanations

Djurtoft,

Bruun,

Riel

et al. 2023

European Journal of Pain

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BackgroundPerceived diagnostic uncertainty can leave adolescents confused about their condition and impede their ability to understand “what's wrong with me”. Our aim is to develop credible explanations about the condition for adolescents suffering from non‐traumatic knee pain.MethodsThis multiple‐method study integrated findings from two systematic literature searches of qualitative and quantitative studies, an Argumentative Delphi with international experts (n = 16) and think‐aloud interviews with adolescents (n = 16). Experts provided feedback with arguments on how to communicate credible explanations to meet adolescents' needs; we analysed feedback using thematic analysis. The explanations were tailored based on the adolescent end‐users' input.ResultsWe screened 3239 titles/abstracts and included 16 papers exploring diagnostic uncertainty from adolescents' and parents' perspectives. Five themes were generated: (1) understanding causes and contributors to the pain experience, (2) feeling stigmatized for having an invisible condition, (3) having a name for pain, (4) controllability of pain, and (5) worried about something being missed. The Argumentative Delphi identified the following themes: (1) multidimensional perspective, (2) tailored to adolescents, (3) validation and reassurance, and (4) careful wording. Merging findings from the systematic search and the Delphi developed three essential domains to address in credible explanations: “What is non‐traumatic knee pain and what does it mean?”, “What is causing my knee pain?” and “How do I manage my knee pain?”ConclusionsSix credible explanations for the six most common diagnoses of non‐traumatic knee pain were developed. We identified three domains to consider when tailoring credible explanations to adolescents experiencing non‐traumatic knee pain.SignificanceThis study provides credible explanations for the six most common diagnoses of non‐traumatic knee pain. Additionally, we identified three key domains that may need to be addressed to reduce diagnostic uncertainty in adolescents suffering from pain complaints. Based on our findings, we believe that clinicians will benefit from exploring adolescents' own perceptions of why they experience pain and perceived management strategies, as this information might capture important clinical information when managing these young individuals.

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PAINSTORIES – Exploring the Temporal Developments in the Challenges, Barriers, and Self-Management Needs of Adolescents with Longstanding Knee Pain: A Qualitative, Retrospective Interview Study with Young Adults Experiencing Knee Pain Since Adolescence

Cited by 17 publications

References 54 publications

Quality of life in adolescents with chronic non-traumatic knee pain: An analysis of 323 adolescents with Patellofemoral Pain and Osgood-Schlatter Disease

Quality of life in adolescents with chronic non-traumatic knee pain: An analysis of 323 adolescents with Patellofemoral Pain and Osgood-Schlatter Disease

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

How do we explain painful non‐traumatic knee conditions to adolescents? A multiple‐method study to develop credible explanations

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