Purpose
The decision-making process regarding cancer treatment is emotionally challenging for patients and families, harboring the risk of decision regret. We aimed to explore prevalence and ...determinants of decision regret following radiotherapy.
Methods
This cross-sectional observational study was conducted at a tertiary cancer center to assess decision regret following radiotherapy. The study employed the German version of the Ottawa Decision Regret Scale (DRS) which was validated in the study population. Decision regret was categorized as absent (0 points), mild (1–25 points), and strong (> 25 points). Various psychosocial outcome measures were collected using validated questionnaires to identify factors that may be associated with decision regret.
Results
Out of 320 eligible patients, 212 participated, with 207 completing the DRS. Median age at start of radiotherapy was 64 years interquartile range (IQR), 56–72, genders were balanced (105 female, 102 male), and the most common cancer types were breast (
n
= 84; 41%), prostate (
n
= 57; 28%), and head-and-neck cancer (
n
= 19; 9%). Radiotherapy was applied with curative intention in 188 patients (91%). Median time between last radiotherapy fraction and questionnaire completion was 23 months (IQR, 1–38). DRS comprehensibility was rated as good or very good by 98% (196 of 201) of patients. Decision regret was reported by 43% (
n
= 90) as absent, 38% (
n
= 78) as mild, and 18% (
n
= 38) as strong. In the multiple regression analysis, poor Eastern Cooperative Oncology Group performance status, low social support, and dissatisfaction with care were independent risk factors for higher decision regret after radiotherapy.
Conclusions
The German version of the DRS could be used to assess decision regret in a diverse cohort of cancer patients undergoing radiotherapy. Decision regret was prevalent in a considerable proportion of patients. Further studies are necessary to validate these findings and obtain causal factors associated with decision regret after radiotherapy.
Fear of progression (FoP) is a frequent symptom among cancer patients, but data among hematological cancer survivors are scarce. Furthermore, theory assumes that FoP serves as link between bodily ...symptoms and different aspects of quality of life. However, this model has not been tested with the bodily symptom cancer-related fatigue (CRF) so far. Therefore, we investigated (i) levels of FoP stratified by type of and time since diagnosis and (ii) whether FoP mediates relationships of CRF with physical functioning (PF) and global quality of life (QoL).
This cross-sectional study recruited long-term survivors of hematological malignancies (mean time since diagnosis: 9 years) via two regional cancer registries. We applied analyses of (co-)variance and mediation analyses to identify indirect effects.
922 survivors participated. There was no overall effect of type of diagnosis on FoP (Fconditional = 1.6, p = .15). However, we found an overall effect of time since diagnosis on FoP (Fconditional = 8.5, p < .001), with FoP being significantly elevated in the group closest to diagnosis. As hypothesized, we found an indirect (mediating) effect of FoP in the associations of CRF with QoL (β = −0.13, 97.5 %-CI = −0.17; −0.09) and PF (β = −0.12, 97.5 %-CI = −0.17; −0.08).
Among long-term survivors of hematological malignancies, a shorter time since diagnosis seems to be associated with elevated levels of FoP. Addressing FoP in psycho-oncological interventions may help to buffer the detrimental effects of CRF. However, longitudinal data is needed to validate our findings.
•FoP does not statistically vary across hematological cancer types.•The years closest to diagnosis are associated with highest levels of FoP.•FoP may mediate associations between cancer-related fatigue and quality of life.
Purpose
In clinical cancer care, distress screening is recommended to identify highly burdened patients in objective need for psychosocial support to improve psychological distress and quality of ...life and to enhance patient empowerment. It is however unclear whether distress screeners are suitable for psychosocial care planning and thus whether they can predict the willingness that is
need
,
intention
, and
utilization
, to seek psychosocial support.
Methods
In a secondary analysis of a cluster intervention study, we assessed cancer patients with three distress screeners (DT, PHQ-9, GAD-7) at baseline. The willingness to seek psychosocial support services was assessed binary for psychosocial services at 3 and 6 months. Logistic regression models were applied to examine the predictive effect of the screeners on need, intention, and utilization. We corrected all models for multiple testing.
Results
The 660 patients included in the study were on average 60 years, 54% were male. At the 3- and 6-month follow-up, 353 and 259 patients participated, respectively. The screeners were best in predicting the need for support (OR reaching up to 1.15, 1.20, and 1.22 for the PHQ-9, GAD-7, and DT respectively). The intention was predicted by the PHQ-9 and GAD-7, whereas utilization of psychosocial support services was not predicted by the screeners.
Conclusion
The three distress screeners might be useful in psychosocial care planning, as they are able to predict the need and to some degree the intention to seek psychosocial support. Future research needs to examine potential barriers and supporting factors that may explain utilization of psychosocial support.
Trial registration
The study was retrospectively registered (2/2021) at ClinicalTrials.gov (number: NCT04749056).
The Patient Health Questionnaire PHQ-9 is a widely used instrument to screen for depression in clinical research. The first aim of this study was to psychometrically test the PHQ-9 in a large sample ...of cancer patients. The second aim was to calculate unbiased estimates of the depression burden for several cancer groups taking into account age and gender distributions.
A sample of 2,059 cancer patients with varying diagnoses were examined in this study six months after discharge from a rehabilitation clinic. A representative sample of 2,693 people from the general population served as controls. Expected PHQ-9 mean scores of the general population sample, regressed on age and gender, were calculated to enable a fair comparison of different groups of cancer patients.
While the reliability (Cronbach's alpha) for the PHQ-9 scale was good (alpha ≥ 0.84), the CFA fit indices of the one-dimensional solution were unsatisfactory in the patients' sample. The factorial analysis confirmed two factors. PHQ-9 mean scores for 15 types of cancer are given, ranging from 4.0 (prostate) to 8.2 (thyroid gland). Differences between expected mean scores (derived from the general population) and raw mean scores of the cancer subsamples are reported that provide a better estimate of the depression burden.
The results confirmed that the PHQ-9 performs well in testing depression in cancer patients. Regression coefficients can be used for performing unbiased comparisons among cancer groups, not only for this study. The burden of patients with testis cancer and Hodgkin lymphoma is underestimated when age and gender are not taken into account.
Background and purpose The possibility of comparing results and of pooling the data has been limited for the Nordic arthroplasty registries, because of different registration systems and ...questionnaires. We have established a common Nordic database, in order to compare demographics and the results of total hip replacement surgery between countries. In addition, we plan to study results in patient groups in which the numbers are too small to be studied in the individual countries.
Material and methods Primary total hip replacements (THRs) from 1995-2006 were selected for the study. Denmark, Sweden, and Norway contributed data. A common code set was made and Cox multiple regression, with adjustment for age, sex, and diagnosis was used to calculate prosthesis survival with any revision as endpoint.
Results 280,201 operations were included (69,242 from Denmark, 140,821 from Sweden, and 70,138 from Norway). Females accounted for 60% of the patients in Denmark and Sweden, and 70% in Norway. Childhood disease was the cause of 3.1%, 1.8%, and 8.7% of the operations in Denmark, Sweden, and Norway, respectively. Resurfacing of hips accounted for 0.5% or less in all countries. The posterior approach was used in 91% of cases in Denmark, 60% in Sweden, and 24% in Norway. Cemented THRs were used in 46% of patients in Denmark, in 89% of patients in Sweden, and in 79% of patients in Norway.
Of the 280,201 primary THRs, 9,596 (3.4%) had been revised. 10-year survival was 92% (95% CI: 91.6-92.4) in Denmark, 94% (95% CI: 93.6-94.1) in Sweden, and 93% (95% CI: 92.3-93.0) in Norway. In Denmark, 34% of the revisions were due to dislocation, as compared to 23% in Sweden and Norway. Replacement of only cup or liner constituted 44% of the revisions in Denmark, 29% in Sweden, and 33% in Norway.
Interpretation This unique common Nordic collaboration has shown differences between the countries concerning demographics, prosthesis fixation, and survival. The large number of patients in this database significantly widens our horizons for future research.
Women with obesity are not only at higher risk of developing cancer such as gynaecological malignancies but are also less likely to attend cancer prevention screenings (CPS). In this study, we aimed ...to obtain a better database for Germany and to investigate whether women with obesity are less likely to undergo CPS compared to women without obesity. Moreover, we aimed to identify factors that determine CPS behaviour.
A quantitative cross-sectional telephone survey was conducted that assessed data of 1003 females in the general public with obesity (BMI ≥ 30 kg/m
; n = 500) and without obesity (BMI < 30 kg/m
; n = 503). We assessed participants' utilisation of cervical, breast, and colorectal CPS. Group differences were investigated by using Chi-Square tests, whereas influencing factors that might determine CPS behaviour were examined by multivariate logistic regression analyses. Therefore, logistic regression models for (a) the full sample and (b) the obese sample were conducted. Explanatory factors (i.e., cancer awareness, the internalisation of weight bias (WBIS) and perceived weight-based discrimination) were included. Confounding factors such as sociodemographic variables were included in the multivariate analysis.
Women with obesity were less likely to undergo Pap smear (χ
(1) = 13.90, p < 0.001) and clinical breast examination (χ
(4) = 14.41, p < 0.01) compared to women without obesity. In contrast, the utilisation of all other CPS methods did not differ between women with and without obesity. Logistic regression analyses revealed neither an association between CPS behaviour and WBI nor perceived weight bias. Instead, previous cancer diagnoses and knowledge about CPS forms were found to reinforce CPS behaviour.
Although data did not suggest that internalised or perceived weight bias deter women with obesity from undergoing CPS, the role of weight bias has not yet been conclusively clarified. Future studies should address potential methodological limitations and evaluate the effectiveness of most recently established cancer prevention programs and in particular how they affect CPS behaviour in women with obesity.
Abstract The population of cancer survivors has grown steadily over the past several decades. Surviving cancer, however, is not synonymous with a life free of problems related to the disease and its ...treatment. In this paper we provide a brief overview of selected physical and psychosocial health problems prevalent among cancer survivors, namely pain, fatigue, psychological distress and work participation. We also address issues surrounding self-management and e-Health interventions for cancer survivors, and programmes to encourage survivors to adopt healthier lifestyles. Finally, we discuss approaches to assessing health-related quality of life in cancer survivors, and the use of cancer registries in conducting psychosocial survivorship research. We highlight research and practice priorities in each of these areas. While the priorities vary per topic, common themes that emerged included: (1) Symptoms should not be viewed in isolation, but rather as part of a cluster of interrelated symptoms. This has implications for both understanding the aetiology of symptoms and for their treatment; (2) Psychosocial interventions need to be evidence-based, and where possible should be tailored to the needs of the individual cancer survivor. Relatively low cost interventions with self-management and e-Health elements may be appropriate for the majority of survivors, with resource intensive interventions being reserved for those most in need; (3) More effort should be devoted to disseminating and implementing interventions in practice, and to evaluating their cost-effectiveness; and (4) Greater attention should be paid to the needs of vulnerable and high-risk populations of survivors, including the socioeconomically disadvantaged and the elderly.
Autonomic dysreflexia is a severe and potentially life-threatening condition in patients with spinal cord injury, as it can lead to myocardial ischemia, brain hemorrhage, or even death. Urodynamic ...investigation is the gold standard to assess neurogenic lower urinary tract dysfunction due to spinal cord injury and reveal crucial pathological findings, such as neurogenic detrusor overactivity. However, neurogenic detrusor overactivity and urodynamic investigation are known to be leading triggers of autonomic dysreflexia. Therefore, we aimed to determine predictors of autonomic dysreflexia in individuals with spinal cord injury during urodynamic investigation.
This prospective cohort study included 300 patients with spinal cord injuries and complete datasets of continuous non-invasive cardiovascular monitoring, recorded during same session repeat urodynamic investigation. We used logistic regression to reveal predictors of autonomic dysreflexia during urodynamic investigation.
We found that level of injury and presence of neurogenic detrusor overactivity were the only two independent significant predictors for autonomic dysreflexia during urodynamic investigation. A lesion at spinal segment T6 or above (odds ratio (OR) 5.5, 95% CI 3.2-9.4) compared to one at T7 or below, and presence of neurogenic detrusor overactivity (OR 2.7, 95% confidence interval (CI) 1.4-4.9) were associated with a significant increased odds of autonomic dysreflexia during urodynamic investigation. Both odds persisted after adjustment for age, sex, and completeness and stage of injury (adjusted OR (AOR) 6.6, 95% CI 3.8-11.7, and AOR 2.2, 95% CI 1.1-4.5, respectively). Further stratification by lesion level showed level-dependent significantly increased adjusted odds of autonomic dysreflexia, i.e., from C1-C4 (AOR 16.2, 95% CI 5.9-57.9) to T4-T6 (AOR 2.6, 95% CI 1.3-5.2), compared to lesions at T7 or below.
In patients with neurogenic lower urinary tract dysfunction due to spinal cord injury, autonomic dysreflexia is independently predicted by lesion level and presence of neurogenic detrusor overactivity. Considering the health risks associated with autonomic dysreflexia, such as seizures, stroke, retinal bleeding, or even death, we recommend both continuous cardiovascular monitoring during urodynamic investigation in all spinal cord-injured patients with emphasis on those with cervical lesions, and appropriate neurogenic detrusor overactivity treatment to reduce the probability of potentially life-threatening complications.
ClinicalTrials.gov, NCT01293110 .
An increasing number of adolescents and young adults (AYA) are becoming cancer survivors and are dealing with long-term effects of the disease and its treatment. We aimed to collect detailed ...self-reported information about the areas of work, education, and the financial situation of AYA survivors after acute treatment. We further examined sources of support that were perceived as particular helpful.
We conducted semi-structured interviews with a sample of 11 AYA cancer survivors (on average 5 years from diagnosis; mean age at diagnosis = 25.7 years) that had been recruited for the AYA-Leipzig longitudinal study. Interviews were transcribed and data were analysed using qualitative content analysis.
The following themes emerged as relevant: (1) career modifications and job loss, (2) career interruptions and delays, (3) uncertainty in the return-to-work process, (4) reduced work ability, (5) discrimination at the workplace, (6) changes in the personal importance of work and (7) financial burdens. Sources of considerable support included relatives as well as German social security institutions.
Health care providers should address the specific risk of a financial burden and the somewhat complex social legal situation of young adult survivors after cancer diagnosis. AYA cancer survivors need age-specific comprehensive cancer survivorship support programs. These should accompany them in the long term and be targeted to the individual need for career modification or reorientation - even after the completion of cancer treatment and rehabilitation.
•AYA survivors of cancer often experience consequences regarding work, education and financial situation.•As relevant emerged: career modifications; uncertainty; reduced work ability and importance; ; and financial burdens.•Sources of considerable support included relatives as well as support from German social security institutions.•The AYA financial and social legal situation should be addressed.•It is helpful to involve close relatives into AYA survivorship concepts.
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that is inevitably fatal. To be diagnosed with a terminal illness such as ALS deeply affects one's personal existence ...and goes along with significant changes regarding the physical, emotional, and social domains of the patients' life. ALS patients have to face a rapidly debilitating physical decline which restrains mobility and impairs all activities of daily living. This progressive loss of autonomy may lead to a sense of hopelessness and loss of quality of life, which in turn may even result in thoughts about physician-assisted suicide. Here, we would like to propose a psychotherapeutic manualized, individual, semi-structured intervention to relieve distress and promote psychological well-being in ALS patients. This short-term intervention was originally developed for advanced cancer patients. "Managing Cancer and Living Meaningfully (CALM)" focuses on the four dimensions: (i) symptom management and communication with healthcare providers, (ii) changes in self and relations with close others, (iii) spirituality, sense of meaning and purpose and (iv) thinking of the future, hope, and mortality. We suggest to supplement the concept by two additional dimensions which take into account specific issues of ALS patients: (v) communication skills, and (vi) emotional expression and control. This therapeutic concept named "
anag
ng
urden in
LS and
iving
eaningfully (mi-BALM)" may be a further treatment option to help improving quality of life of ALS patients.