The personal impact of living with a myeloproliferative neoplasm.

OBJECTIVE: The aim of this study is to gain insight into the physical, psychological and social impact of having a myeloproliferative neoplasm (MPN), a rare type of cancer with an often chronic course. METHODS: An online survey was conducted among 455 Dutch MPN patients (62.7% female, age M 63) to explore the impact of the disease by measuring the MPN symptom burden (MPN-SAF TSS) and quality of life (QoL) (EORTC QLQ-C30) and its subscales within a hierarchical QoL model. We examined differences in MPN symptom burden and QoL in relation to sociodemographic and disease-related factors. Hierarchical regression analysis was used to explain variances in QoL. RESULTS: Most patients (97%) experienced MPN-related health complaints, with a significantly higher MPN symptom burden in women (M 31.50) compared to men (M 24.10). Regarding to fatigue and cognitive functioning MPN patients suffered more compared to a reference group of other cancers. MPN subtype or type of treatment did not show significant differences in MPN symptom burden or QoL. However, experiencing side effects, complications or comorbidities significantly negatively affected MPN symptom burden and QoL. 48.8% of patients reported that MPN affected their ability to work. The explained variance in overall QoL was 58%, most importantly by disease progression, comorbidities, MPN symptom burden and role, emotional and social functioning. CONCLUSION: This study revealed that having an MPN has a negative impact on several domains of QoL. Symptom assessment and support should be included in the healthcare management of MPN patients.

Psychometric properties of the Dutch extended Cancer Survivors' Unmet Needs measure (CaSUN-NL).

Information and support needs increase emotional distress and can impede cancer survivors' adjustment. To investigate the information and support needs of Dutch cancer survivors, the Cancer Survivors' Unmet Needs measure (CaSUN) was translated into Dutch and applied in two Dutch studies with cancer survivors (N = 255; N = 467). The CaSUN-NL entailed the original five CaSUN scales, extended with respectively a returning to work and lifestyle scale. This study aimed to determine the psychometric properties of the CaSUN-NL. To assess validity, a maximum likelihood factor analysis was employed. Construct validity was analysed using Pearson's and Spearman's correlation coefficients. To assess reliability, test-retest (Kappa coefficient) and internal consistency (Cronbach's alpha) values were determined. Factor analysis revealed the original five factors. Test-retest reliability was low (r ≤ .15, 93% retest response). Internal consistency values were high (Cronbach's alpha = 0.92-0.94), except for lifestyle. Significant correlations were found between total number of unmet needs with anxiety (r = .55), depression (r = .49), negative adjustment (r = .50), quality of life (r = -.52) and age (r = -.24). The CaSUN-NL is valid and reliable to investigate the unmet information and support needs of Dutch cancer survivors.

Effectiveness of video- versus text-based computer-tailored smoking cessation interventions among smokers after one year.

BACKGROUND: In western countries, smoking prevalence rates are high among smokers unmotivated to quit and those with a lower socioeconomic status (LSES). Multiple computer tailoring and the use of audio-visual aids may improve such interventions and increase cessation in LSES smokers. This study assessed the 12-month effectiveness of a video- and text-based computer-tailored intervention. METHODS: A randomized controlled trial in the Netherlands was used in which smokers were allocated to the video-based condition (VC) (N=670), the text-based condition (TC) (N=708) or the control condition (CC) (brief generic text advice) (N=721). After 12months, self-reported prolonged abstinence was assessed and biochemically verified in respondents indicating to have quit smoking. Three analysis strategies were used to assess the effects: (1) multiple imputation (MI); (2) intention-to-treat (ITT); (3) complete case analysis (CC). RESULTS: VC was more effective in prolonged abstinence compared to CC (odds ratio (OR)=1.90, p=.005) and the text-based condition (OR=1.71, p=.01). VC was furthermore more effective than TC. No differences were found for SES and motivational levels. Results were similar when using ITT and CC. For our secondary outcome seven-day point prevalence abstinence; however, neither VC (OR=1.17, p=.34) or TC (OR=0.91, p=.52) outperformed the CC. CONCLUSION: The video-based computer-tailored intervention was effective in obtaining substantial long-term abstinence compared to the text-based version and a brief generic text advice.