Persistent symptoms of fatigue, neuropathy and role‐functioning impairment among indolent non‐Hodgkin lymphoma survivors: A longitudinal PROFILES registry study

Abstract

Summary Little is known about the long‐term health‐related quality of life (HRQoL) and persistence of symptoms among patients with indolent non‐Hodgkin lymphoma (iNHL). This large population‐based longitudinal study therefore investigated the long‐term HRQoL and persistence of symptoms and identified associated sociodemographic, clinical and psychological factors. Patients diagnosed between 1999 and 2014 and four or more months after diagnosis were invited to participate in a longitudinal survey. Sociodemographic and clinical data were obtained from the Netherlands Cancer Registry. The EORTC QLQ‐C30 and CLL‐16 were completed by 669 patients (74% response rate). Patients completed on average four questionnaires. Primary treatment was active surveillance (52%), systemic therapy (31%) or radiotherapy (13%). Respectively, 36% reported persistent fatigue, 33% persistent neuropathy and 25% persistent role‐functioning impairment. This was 2–3 times higher than in the age‐ and sex‐matched normative population. Up to 10 years after diagnosis, scores remained relatively stable without clinically relevant changes. Comorbidities, psychological distress, shorter time since diagnosis, systemic therapy, younger age, education level and having no partner were associated with worse outcomes (all ps < 0.05). Up to a third of patients with iNHL experience long‐term persistent symptoms which do not improve over time. Early recognition of symptoms will help in providing tailored supportive care for those in need.

The remodeling of metabolic brain pattern in patients with extracranial diffuse large B-cell lymphoma

“…Consequently, these dysfunctional brain regions might be involved in the formation of DLBCLRP-associated neuropsychiatric symptoms, including visual hallucinations, depression, anxiety, cognitive and speech dysfunctions, fatigue, etc. [ 4 , 10 , 37 , 41 ].…”

“…Owing to the advances in diagnosis and therapy, survival or remission rates for lymphoma have improved prominently. Apart from the lymphoma- and chemotherapy-related somatic symptom burden, increasing attention has been drawn to the health-related quality of life [ 4 , 5 ]. In particular, the presence of cognitive impairment, negative psychological status (e.g., anxiety, depression and committing suicide) or other emotional symptoms among patients with hematological cancer was supposed to be more likely than those with solid tumor [ 6 – 9 ].…”

Cancer survivor late-effects, chronic health problems after cancer treatment: what’s the evidence from population and registry data and where are the gaps?

“…This includes 36% of people reporting fatigue and 33% reporting neuropathy. For 25% of NHL survivors, this impacted HRQOL role functioning as measured by EORTC QLQ-C30 [12▪▪]. Fatigue was also reported as being significantly higher in those treated for NHL compared with a matched non-cancer population; 19–23% reported an improvement in fatigue over time and 44–45% reported constant fatigue up to 10 years post diagnosis [25].…”

“…There is a paucity of multi-domain late effects data from clinical trials and population studies are valuable in providing information on a wider demographic and over a longer time interval. Healthcare providers need to know who is at higher risk, trajectories of symptoms over time and who may need more supportive care to mitigate symptoms and promote health [12▪▪].

KEY POINTS Late effects of cancer treatment continue to cause physical and psychological problems up to 10 years after therapy. Women treated for breast cancer had greater incidence of cardiovascular disease than women of a similar age without cancer. Comorbidities (2 or more), older age and obesity increased an individual’s risk of cancer treatment-related cardiovascular late effects. People treated for non-Hodgkin lymphoma and recipients of bone marrow transplant were at greater risk of a second cancer after cancer treatment. Cancer survivors report lower cognitive function and have a higher incidence of depression than age-matched controls without cancer.

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“…Increased scores of fatigue dyspnoea and insomnia. Symptoms of diarrhoea, faecal incontinence, anal pain, and sexual dysfunction were common Factors leading to greater symptoms not explored Ekels et al 2022 [12▪▪]Netherlands Population registry study of 669 patients diagnosed between 1999 and 2014 for indolent non-Hodgkin lymphoma Study of long-term HRQOL and persistence of symptoms after treatment Comparative non cancer population age and sex matched PROs collected for EORTC QLQ-C30 and CLL-16 (74% response rate) Up to one third experienced long-term symptoms.36% reported persistent fatigue33% persistent neuropathy25% role functioning impairmentSymptoms 2–3 times higher than controls Those with comorbidities, psychological distress, younger age, shorter time since diagnosis and no partner were associated with worse outcomes ( P < 0.05) Kreiberg et al 2020 [28] Denmark Cross-sectional population study of men treated for testicular cancer between 2014 and 2916, 2252 men were sent questionnaires (PSS)Study to identify prevalence of stress post treatment Comparative population ( n = 61 927) of men without cancer sampled at random Median time since diagnosis 19 yearsStress determined by PSS scores of ≥16 Men with testicular cancer had higher levels of stress than reference population. Ratio = 1.56 (95% CI 1.40–1.73) Those men who had received chemotherapy and radiotherapy had greater levels of stress Hu et al 2023 [29] USA Cohort study of 18 134 men with prostate cancer between 2014 and 2017Study to assess incidence of mental health disorders among men with prostate cancer Comparison with 73 470 age, matched men without cancer Data from electronic health records Mood disorders, including depression among men with prostate cancer was higher than the general population even 10–16 years after treatment Higher risk of mental health disorders among men from lower socioeconomic status ( P > 0.0001) and increased duration of androgen therapy ( P < 0.03) AKI, acute kidney injury; BMT, bone marrow transplant; CHD, congestive heart failure; CRVFs, cardiovascular risk factors; CVD, cardiovascular disease; HCT, haematopoietic stem cell transplant; HF, heart failure; HR, hazards ratio; HRQOL, health-related QOL; IR, incidence ratio; IRR, incidence rate ratio; MI, myocardial infarction; PSS, perceived stress scale; QOL, quality of life. …”