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1.
Eur Arch Otorhinolaryngol ; 279(6): 2819-2826, 2022 Jun.
Article in English | MEDLINE | ID: mdl-34218308

ABSTRACT

BACKGROUND: Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and their effects on daily life. OBJECTIVES: This study assessed employment status, sick leave (absenteeism) and being less productive at work (presenteeism) in the long-term follow-up of VS patients, and evaluated the impact of treatment strategy (active surveillance, surgery or radiotherapy). METHODS: A cross-sectional survey study was performed in a tertiary university hospital in the Netherlands. Patients completed the iMTA-post productivity questionnaire (iPCQ). Employment status was compared to that of the general Dutch population. Employment, absenteeism and presenteeism were compared between patients under active surveillance, patients after radiotherapy and post-surgical patients. RESULT: In total 239 patients participated, of which 67% were employed at the time of the study. Only 14% had a disability pension, which was comparable to the age-matched general Dutch population. The proportion of patients with absenteeism was 8%, resulting in a 4% reduction of working hours. Presenteeism was reported by 14% of patients, resulting in a 2% reduction of working hours. The median number of working hours per week was 36, and since the diagnosis, these hours had been reduced by 6%. There were no significant differences between treatment modalities. CONCLUSION: On average, long-term employment status and working hours of VS patients are comparable to the age-matched general population. Treatment strategies do not seem to differentially impact on long-term employment of VS patients.


Subject(s)
Neuroma, Acoustic , Quality of Life , Absenteeism , Cross-Sectional Studies , Employment , Humans , Neuroma, Acoustic/surgery , Surveys and Questionnaires
2.
Palliat Med ; 35(10): 1865-1877, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34176357

ABSTRACT

BACKGROUND: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. AIM: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. DESIGN: Exploratory inductive thematic analysis of 101 audio-recorded conversations. SETTING/PARTICIPANTS: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. RESULTS: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches-a shared approach or a physician-driven approach-or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences. CONCLUSIONS: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.


Subject(s)
Physicians , Adult , Child , Communication , Critical Care , Decision Making , Family , Female , Humans , Infant, Newborn , Male , Qualitative Research
3.
Eur Arch Otorhinolaryngol ; 278(9): 3237-3244, 2021 Sep.
Article in English | MEDLINE | ID: mdl-33026499

ABSTRACT

PURPOSE: In cases of small- to medium-sized vestibular schwannomas, three management strategies can be opted for: active surveillance, surgery or radiotherapy. In these cases, the patient's preference is pivotal in decision-making. The aim of this study was to identify factors that influence a patient's decision for a particular management strategy. METHODS: A qualitative inductive thematic analysis was performed based on semi-structured interviews. Eighteen patients with small- to medium-sized vestibular schwannomas were interviewed. All patients were diagnosed or treated at one of the two participating university medical centers in the Netherlands. RESULTS: Ten themes were identified that influenced the decision, classified as either medical or patient-related. The medical themes that emerged were: tumor characteristics, the physician's recommendation, treatment outcomes and the perceived center's experience. The patient-related themes were: personal characteristics, anxiety, experiences, cognitions, logistics and trust in the physician. CONCLUSION: Knowledge of the factors that influence decision-making helps physicians to tailor their consultations to arrive at a true shared decision on vestibular schwannoma management.


Subject(s)
Neurilemmoma , Neuroma, Acoustic , Decision Making , Humans , Netherlands , Neuroma, Acoustic/therapy , Patient Reported Outcome Measures , Qualitative Research
4.
Article in English | MEDLINE | ID: mdl-27774666

ABSTRACT

Current practices in counselling of female cancer patients with respect to fertility issues need considerable improvement, particularly given the general underuse of fertility preservation options and the negative impact that infertility can have on quality of life. We investigated the relationship between physicians' and physician-related factors and the frequency of physicians discussing fertility issues and referring to a reproductive specialist. We invited 1,832 physicians in the Netherlands who had treated at least five reproductive-age female cancer patients within the past year to complete a questionnaire. Of the 748 respondents, 406 met our inclusion criteria, and 280 participated. Analysis revealed that 79% of the participants usually or always discuss fertility issues. Specialty, confidence in knowledge regarding fertility issues and a lack of reproductive specialists in their region contributed independently to the variance in the frequency of discussing fertility issues. Moreover, 54% either regularly or always refer. Specialty and frequency of discussion contributed independently to the variance in referral. In conclusion, although high, frequency of discussion of fertility issues is not optimal, and referral seems limited. Patients would benefit from more knowledge among physicians regarding fertility issues and referral options, both in terms of informed choice, and more importantly, quality of life.


Subject(s)
Counseling/statistics & numerical data , Fertility Preservation , Infertility/prevention & control , Neoplasms/complications , Practice Patterns, Physicians'/statistics & numerical data , Referral and Consultation/statistics & numerical data , Adult , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Netherlands , Quality of Life
5.
Psychooncology ; 26(7): 943-950, 2017 07.
Article in English | MEDLINE | ID: mdl-27502561

ABSTRACT

OBJECTIVES: To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? METHODS: Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. RESULTS: The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. CONCLUSIONS: It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.


Subject(s)
Communication , Decision Making , Neoplasms/drug therapy , Oncologists/psychology , Physician-Patient Relations , Aged , Chemotherapy, Adjuvant , Female , Humans , Male , Middle Aged , Tape Recording
6.
Psychooncology ; 26(10): 1470-1477, 2017 Oct.
Article in English | MEDLINE | ID: mdl-27862635

ABSTRACT

BACKGROUND: To assess whether sexual distress among cervical cancer (CC) survivors is associated with frequently reported vaginal sexual symptoms, other proposed biopsychosocial factors and whether worries about painful intercourse mediate the relation between vaginal sexual symptoms and sexual distress. METHODS: A cross-sectional study was conducted among 194 sexually active partnered CC survivors aged 25 to 69 years. Sexual distress, vaginal sexual symptoms, sexual pain worry, anxiety, depression, body image concerns, and relationship dissatisfaction and the sociodemographic variables age, time since treatment, and relationship duration were assessed by using validated self-administrated questionnaires. RESULTS: In total, 33% (n = 64) of the survivors scored above the cut-off score for sexual distress. Higher levels of sexual distress were shown to be associated with higher levels of vaginal sexual symptoms, sexual pain worry, relationship dissatisfaction, and body image concerns. Furthermore, the results showed that sexual pain worry partly mediated the association between vaginal sexual symptoms and sexual distress, when controlling for relationship dissatisfaction and body image concerns. CONCLUSIONS: Appropriate rehabilitation programs should be developed for CC survivors to prevent and reduce not only vaginal sexual symptoms but also sexual pain worry, relationship dissatisfaction, and body image concerns to reduce sexual distress.


Subject(s)
Anxiety/psychology , Body Image , Cancer Survivors/psychology , Depression/psychology , Uterine Cervical Neoplasms/psychology , Adult , Aged , Cross-Sectional Studies , Dyspareunia/psychology , Female , Humans , Middle Aged , Pain/psychology , Sexual Behavior , Sexual Partners , Surveys and Questionnaires
7.
Qual Life Res ; 25(7): 1853-8, 2016 07.
Article in English | MEDLINE | ID: mdl-26711791

ABSTRACT

PURPOSE: To validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer. METHODS: We translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals. RESULTS: Of 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies. CONCLUSION: We found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.


Subject(s)
Colorectal Neoplasms/psychology , Psychometrics/methods , Quality of Life/psychology , Surveys and Questionnaires , Adult , Aged , Body Image/psychology , Colorectal Neoplasms/therapy , Ethnicity , Female , Humans , Male , Middle Aged , Netherlands , Reproducibility of Results , Translations , Urinary Incontinence/psychology
8.
Br J Cancer ; 112(1): 39-43, 2015 Jan 06.
Article in English | MEDLINE | ID: mdl-25333343

ABSTRACT

BACKGROUND: For shared decision making to be successful, patients should receive sufficient information on possible benefits and harms of treatment options. The aim of this study was to evaluate what information radiation oncologists provide during the decision consultation about preoperative radiotherapy with rectal cancer patients. METHODS: Decision consultations of 17 radiation oncologists with 81 consecutive primary rectal cancer patients, eligible for short-course radiotherapy followed by a low-anterior resection, were audio taped. Tapes were transcribed and analysed using the ACEPP (Assessing Communication about Evidence and Patient Preferences) coding scheme. RESULTS: A median of seven benefits/harms were addressed per consultation (range, 2-13). This number ranged within and between oncologists and was not clearly associated with the patient's characteristics. A total of 30 different treatment outcomes were addressed. The effect of radiotherapy on local control was addressed in all consultations, the effect on survival in 16%. The most important adverse effects are bowel and sexual dysfunction. These were addressed in 82% and 85% of consultations, respectively; the latter significantly less often in female than in male patients. Four out of five patients did not initiate discussion on any benefits/harms. CONCLUSIONS: Our results showed considerable inconsistency between and within oncologists in information provision, which could not be explained by patient characteristics. This variation indicates a lack of clarity on which benefits/harms of radiotherapy should be discussed with newly-diagnosed patients. This suboptimal patient information hampers the process of shared decision making, in which the decision is based on each individual patients' weighing of benefits and harms.


Subject(s)
Decision Making , Rectal Neoplasms/radiotherapy , Referral and Consultation , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Physician-Patient Relations , Treatment Outcome
9.
Br J Cancer ; 111(4): 674-9, 2014 Aug 12.
Article in English | MEDLINE | ID: mdl-24921911

ABSTRACT

BACKGROUND: Vaginal brachytherapy (VBT) in high-intermediate-risk endometrial cancer (EC) provides a significant reduction in the risk of local cancer recurrence, but without survival benefit and with increased mucosal atrophy. Five-year local control is estimated to be similar for VBT and a watchful waiting policy (WWP), in which patients receive VBT combined with external radiation in case of a recurrence. Our aim was to assess treatment preferences of EC patients and clinicians regarding VBT and WWP, and to evaluate their preferred and perceived involvement in treatment decision making. METHODS: Interviews were held with 95 treated EC patients. The treatment trade-off method was used to assess the minimally desired benefit from VBT in local control. Patients' preferred and perceived involvement in decision making were assessed using a questionnaire. Seventy-seven clinicians completed a questionnaire assessing their minimally desired benefit and preferred involvement in decision making. RESULTS: Minimally desired benefit of VBT was significantly lower for patients than for clinicians (median=0 vs 8%, P<0.001), for irradiated than for non-irradiated patients (median=0 vs 6.5%, P<0.001), and for radiation oncologists than for gynaecologists (median=4 vs 13%, P<0.001). Substantial variation existed within the groups of patients and clinicians. Participants preferred the patient and clinician to share in the decision about VBT. However, irradiated patients indicated low perceived involvement in actual treatment decision making. CONCLUSIONS: We found variations between and within patients and clinicians in minimally desired benefit from VBT. However, the recurrence risk at which patients preferred VBT was low. Our results showed that patients consider active participation in decision making essential.


Subject(s)
Endometrial Neoplasms/radiotherapy , Patient Preference , Aged , Aged, 80 and over , Brachytherapy , Decision Making , Female , Humans , Middle Aged , Patient Outcome Assessment , Patient Participation , Physician-Patient Relations , Physicians , Surveys and Questionnaires
10.
Psychol Med ; 44(11): 2301-8, 2014 Aug.
Article in English | MEDLINE | ID: mdl-24398071

ABSTRACT

BACKGROUND: Antidepressants are frequently prescribed but results regarding their efficacy have been equivocal for different spectra of the severity continuum and their side-effects are often burdensome. Non-adherence is a likely consequence. The objective was therefore to examine patients' trade-offs between the efficacy, side-effects and other drawbacks of antidepressants and whether these trade-offs predicted non-adherence. METHOD: Trade-offs from 225 antidepressant users, recruited through community pharmacies, were assessed with an Adaptive Conjoint Analysis (ACA) choice task that was customized to each individual patient. From the estimated utilities, relative importance scores of treatment properties were calculated. Non-adherence was measured through self-report and pharmacy refill data. RESULTS: Relapse prevention and symptom relief were on average equally important. Side-effects were as important and the side-effect stomach and intestine complaints was on average even slightly more important than relapse prevention and symptom relief. Additional treatment with psychotherapy was preferred by 61% of the patients. A benefit/drawback ratio revealed that 18% of the patients did not consider the efficacy to outweigh the drawbacks. A higher benefit/drawback ratio was associated with a decreased odds of intentional non-adherence [odds ratio (OR) 0.2, 95% confidence interval (CI) 0.07-0.7, Wald = 6.7, p = 0.01). CONCLUSIONS: For nearly one in five patients, the efficacy of antidepressants does not outweigh their drawbacks. Knowing patients' trade-offs is likely to aid both physicians and patients to identify important treatment preferences, to improve adherence and to make more deliberate decisions on whether or not to continue treatment.


Subject(s)
Antidepressive Agents/therapeutic use , Depressive Disorder/therapy , Medication Adherence/statistics & numerical data , Patient Preference/statistics & numerical data , Primary Health Care/statistics & numerical data , Adult , Aged , Antidepressive Agents/adverse effects , Depressive Disorder/drug therapy , Female , Humans , Male , Middle Aged
11.
Colorectal Dis ; 16(2): O43-9, 2014 Feb.
Article in English | MEDLINE | ID: mdl-24188458

ABSTRACT

AIM: Surgery for rectal and sigmoid cancer is a model setting for investigating preoperative information provision and shared decision making (SDM), as the decision consists of a trade-off between the pros and cons of different treatment options. The aim of this study was to explore surgeons' opinion on the preoperative information that should be given to rectal and sigmoid cancer patients and to evaluate what is actually communicated. In addition, we assessed surgeons' attitudes towards SDM and compared these with patient involvement. METHOD: A questionnaire was sent to Dutch surgeons with an interest in gastroenterology. Preoperative consultations were recorded. A checklist was used to code the information that surgeons communicated to the patients. The OPTION-scale was used to measure patient involvement. RESULTS: Questionnaires were sent to 240 surgeons, and 103 (43%) responded. They stated that information on anastomotic leakage and its consequences, the benefits and risks of a defunctioning stoma and the impact of a stoma on quality of life were necessary preoperative information. In practice, patients were inconsistently informed of these items. Most participants agreed to using SDM in their consultations. However, in practice, most patients were offered only one treatment option and little SDM was seen. The mean OPTION-score was low (7/100). CONCLUSION: Insufficient information is given to patients with rectal and sigmoid cancer to guide them on their preferred surgical option. Information should be given on all treatment options, together with their complications and outcome, before any decision is made.


Subject(s)
Colorectal Surgery/methods , Communication , Decision Making , Patient Participation , Preoperative Period , Rectal Neoplasms/surgery , Risk , Sigmoid Neoplasms/surgery , Adult , Aged , Aged, 80 and over , Anastomotic Leak , Colostomy , Fecal Incontinence , Female , Humans , Male , Middle Aged , Netherlands , Physician-Patient Relations , Referral and Consultation , Surgical Stomas , Surveys and Questionnaires
12.
Ann Oncol ; 24(9): 2324-9, 2013 Sep.
Article in English | MEDLINE | ID: mdl-23709173

ABSTRACT

BACKGROUND: There is substantial nonadherence to effective adjuvant endocrine therapy for breast cancer prevention. We therefore examined patients' trade-offs between the efficacy, side-effects, and regimen duration, and whether trade-offs predicted nonadherence. PATIENTS AND METHODS: Trade-offs from 241 women were assessed with an Adaptive Conjoint Analysis (ACA) choice task that was customized to each individual patient. From the estimated ACA utilities, the relative importance of each treatment property was calculated and a benefit/drawback ratio between the importance of the efficacy versus that of the side-effects and other treatment properties. Nonadherence was assessed through composites of validated self-report measures. RESULTS: Efficacy was most important. The side-effects joint and muscle pain and risk of endometrial cancer were almost as important. The benefit/drawback ratio showed 16% of the women to value the efficacy less than the side-effects and other treatment properties. A higher benefit/drawback ratio was associated with decreased nonadherence [adjusted odds ratio (OR) 0.1, 95% confidence interval 0.03-0.3]. CONCLUSIONS: One in six women do not consider the efficacy of endocrine therapy to outweigh its drawbacks. Knowing women's trade-offs is likely to identify women at risk for nonadherence and to help clinicians in tailoring their communication and care to different needs of individual women.


Subject(s)
Breast Neoplasms/drug therapy , Chemotherapy, Adjuvant/adverse effects , Medication Adherence/psychology , Patient Preference , Receptors, Estrogen/metabolism , Aged , Antineoplastic Agents, Hormonal/therapeutic use , Female , Humans , Middle Aged , Tamoxifen/therapeutic use
13.
Clin Genet ; 79(3): 207-18, 2011 Mar.
Article in English | MEDLINE | ID: mdl-21114486

ABSTRACT

Previous studies on the counsellees' perception of DNA test results did not clarify whether counsellees were asked about their recollections or interpretations, and focused only on patients' own risks and not on the likelihood that cancer is heritable in the family. We tested differences and correlations of four perception aspects: recollections and interpretations of both cancer risks and heredity likelihood. In a retrospective study, women tested for BRCA1/2 on average, 5 years ago, completed questionnaires about their perception. Participants had received an unclassified variant (n = 76), uninformative (n = 76) or pathogenic mutation (n = 51) result in BRCA1/2. Analyses included t-tests, correlations and structural equation modelling. The counsellees' perception showed to consist of four distinctive phenomena: recollections and interpretations of cancer risks and of heredity likelihood. This distinctiveness was suggested by significant differences between these perception variables. Moderate to strong correlations were found between these variables, suggesting that these differences between variables were consistent. The relationships between these variables were not influenced by actually communicated DNA test results, sociodemographics, medical and pedigree information, or framing of cancer risk questions. The largest differences between recollections and interpretations were found in the unclassified variant group and the smallest in uninformatives. Cancer risks and heredity likelihood correlated least in the pathogenic mutation group. Communication of ambiguous genetic information enlarged the differences. To understand the counsellees' perception of genetic counselling, researchers should study recollections and interpretations of cancer risks and heredity likelihood. Genetic counsellors should explicitly address the counsellees' recollections and interpretations, and be aware of possible inaccuracies.


Subject(s)
Breast Neoplasms , Genetic Counseling , Genetic Testing/statistics & numerical data , Mental Recall , Ovarian Neoplasms , Perception , Risk , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Female , Genes, BRCA1 , Genes, BRCA2 , Humans , Middle Aged , Models, Theoretical , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology , Retrospective Studies , Surveys and Questionnaires
14.
Patient Educ Couns ; 74(2): 264-71, 2009 Feb.
Article in English | MEDLINE | ID: mdl-18954956

ABSTRACT

OBJECTIVE: The objective of the study was to investigate the effect of a priori information on preferences for treatment elicited in a discrete choice experiment. METHODS: A convenience sample of 100 subjects was randomly split into two groups. The groups received minimal or extensive information on the treatment of ankle and foot impairment in stroke. Then, they participated in a discrete choice experiment. Possible treatment was described using eight decision criteria with two to four levels each. Part-worth utility coefficients for the criteria levels, criteria importance and overall treatment preference were estimated. It was tested whether the amount of information that was received influenced the outcome of the discrete choice experiment. RESULTS: In the extensively informed group fewer reversals in the expected order of part-worth utilities were found. Criteria importance for four of the eight criteria and criteria importance ranking between the minimally and extensively informed subject groups were significantly different. The difference in part-worth utility of the levels had a minor effect on the predicted utility of the available treatments. CONCLUSION: The lower number of level rank reversals in the extensively informed subjects indicates a better understanding of outcome desirability and thus a better understanding of the decision task. The effect of more extensive information on predicted treatment preference was minimal. PRACTICE IMPLICATIONS: While interpreting the results of a discrete choice experiment, the effect of prior knowledge on the decision problem has to be taken into account. Although information seems to increase the understanding of the decision task, outcomes valuation can also be directed by information and more extensive information increases the cognitive burden which is placed on the subjects. Future research should focus on the exact nature and size of the effects and the results of this study should be clinically validated.


Subject(s)
Choice Behavior , Patient Acceptance of Health Care/psychology , Patient Education as Topic/methods , Adult , Data Interpretation, Statistical , Decision Trees , Female , Gait Disorders, Neurologic/etiology , Gait Disorders, Neurologic/rehabilitation , Humans , Male , Netherlands , Orthopedic Procedures/adverse effects , Orthopedic Procedures/psychology , Orthotic Devices/adverse effects , Pamphlets , Patient Selection , Social Desirability , Statistics, Nonparametric , Stroke/complications , Treatment Outcome
15.
J Neurol ; 255(10): 1580-7, 2008 Oct.
Article in English | MEDLINE | ID: mdl-18821041

ABSTRACT

BACKGROUND: Insight in how impairments and disabilities related to Parkinson's disease (PD) influence health-related quality of life (HRQoL) is required to review adequacy of current management strategies. METHODS: The Scales for Outcomes in Parkinson's disease (SCOPA) evaluation was used to assess impairments and disabilities. HRQoL was assessed with the EuroQol-5D Visual Analogue Scale. 378 patients with PD who participated in the SCOPA/PROPARK cohort were assessed while on their usual treatment. Multiple linear regression analysis and structural equation modelling were used to construct a model of factors that influence HRQoL. RESULTS: A model with good fit was constructed that identified various impairments and disabilities as important contributors to HRQoL in PD. Of the disabilities, psychosocial well-being had a larger impact on HRQoL than physical functioning. Of the impairments, depression had the largest contribution to HRQoL, followed by axial motor symptoms, gastrointestinal symptoms, and urinary symptoms. In addition, pain, psychiatric and motor complications, and daytime sleepiness had small but significant influences on HRQoL. CONCLUSION: Multiple factors, including disabilities, nonmotor symptoms and axial motor symptoms, affect HRQoL in patients with PD. In patients who are on symptomatic treatment aiming to alleviate mainly motor symptoms, there is a large impact on HRQoL of nonmotor and nondopaminergic symptoms. Research is warranted to develop and evaluate management strategies for the aspects that currently impact on HRQoL as psychosocial well-being, depressive symptoms, axial motor symptoms, gastrointestinal symptoms, and urinary symptoms. These findings call for a multidisciplinary approach in the care of these features.


Subject(s)
Models, Psychological , Parkinson Disease/psychology , Quality of Life , Activities of Daily Living , Autonomic Nervous System Diseases/psychology , Cognition Disorders/psychology , Cohort Studies , Depression/psychology , Female , Humans , Linear Models , Longitudinal Studies , Male , Middle Aged , Pain , Psychomotor Disorders/psychology , Sleep , Surveys and Questionnaires
16.
J Cardiovasc Surg (Torino) ; 49(1): 51-8, 2008 Feb.
Article in English | MEDLINE | ID: mdl-18212687

ABSTRACT

AIM: Recent evidence indicates that bone marrow mononuclear cells (BMC) promote collateral vessel formation in patients with severe peripheral arterial disease (PAD). However, aspects concerning optimal administration mode, durability and long-term safety require consideration. Combined intra-arterial (IA) plus intramuscular (IM) BMC delivery may be more effective than exclusive intramuscular injections. The aim of this study was to evaluate feasibility, safety and effect of exclusive IM versus combined IM+IA delivery of autologous BMC in patients who were not candidates for surgical or endovascular treatment. METHODS: Twenty-seven patients were treated with either combined IA+IM (N=12) or sole IM (N=15) administration of autologous BMC. Efficacy was assessed after 1, 6 and 12 months. Limb salvage, pain-free walking distance, ankle-brachial pressure index (ABI) and pain scores were evaluated. RESULTS: There were no adverse reactions related to injection of the cells. Three patients died within the first year of follow-up due to non-procedure related causes. Two patients in the IA+IM group required limb amputation because of ongoing critical ischemia versus 7 patients in the IM group (P=0.17). BMC treatment in the remaining patients resulted in a significant and sustained (>12 months) improvement. Pain-free walking distance improved from 81+/-56 meters at baseline to 257+/-126 meters at t=6 months (P=0.0002). Mean ABI increased 23% after 6 months (P=0.01) and pain score reduced for up to 50% as shown by Brief Pain Inventory (P=0.001). CONCLUSION: Both IM and combined IM/IA delivery of autologous BMC are safe, and result in relevant and sustained improvement in a considerable proportion of patients with severe PAD who are not amenable for conventional treatment.


Subject(s)
Bone Marrow Transplantation/methods , Ischemia/surgery , Leukocytes, Mononuclear/transplantation , Lower Extremity/blood supply , Adult , Aged , Amputation, Surgical , Ankle/blood supply , Blood Pressure , Bone Marrow Transplantation/adverse effects , Brachial Artery/physiopathology , Feasibility Studies , Female , Humans , Injections, Intra-Arterial , Injections, Intramuscular , Intermittent Claudication/etiology , Intermittent Claudication/physiopathology , Ischemia/complications , Ischemia/mortality , Ischemia/physiopathology , Limb Salvage , Male , Middle Aged , Pain Measurement , Recovery of Function , Severity of Illness Index , Time Factors , Treatment Outcome , Walking
17.
Gen Hosp Psychiatry ; 54: 18-24, 2018.
Article in English | MEDLINE | ID: mdl-30048764

ABSTRACT

OBJECTIVE: To investigate treatment selection in a naturalistic sample of MDD outpatients and the factors influencing treatment selection in specialized psychiatric care. METHOD: Multinomial Logistic Regression analysis investigated associations between treatment selection and patients' sociodemographic and clinical characteristics, using retrospective chart review data and Routine Outcome Monitoring (ROM) data of MDD outpatients. RESULTS: Of the patients included for analyses (N = 263), 34% received psychotherapy, 32% received an antidepressant (AD) and 35% received a combination. Men were more likely than women to receive AD with reference to psychotherapy (ORAD = 5.57, 95% CI 2.38-13.00). Patients with severe depression and patients with AD use upon referral, prescribed by their general practitioner, were more likely to receive AD (ORsevere depression = 5.34, 95% CI 1.70-16.78/ORAD GP = 9.26, 95% CI 2.53-33.90) or combined treatment (ORsevere depression = 6.32, 95% CI 1.86-21.49/ORAD GP = 22.36, 95% CI 5.89-83.59) with respect to psychotherapy. More severe patients with AD upon referral received combined treatment less often compared to psychotherapy (OR = 0.14, 95% CI 0.03-0.68). CONCLUSION: AD prescriptions in primary care, severity and gender influenced treatment selection for depressive disorders in secondary psychiatric care. Other factors such as the accessibility of treatment and patient preferences may have played a role in treatment selection in this setting and need further investigation.


Subject(s)
Antidepressive Agents/therapeutic use , Clinical Decision-Making , Depressive Disorder, Major/therapy , Drug Prescriptions/statistics & numerical data , Mental Health Services/statistics & numerical data , Patient Preference/statistics & numerical data , Primary Health Care/statistics & numerical data , Psychotherapy/statistics & numerical data , Adult , Combined Modality Therapy , Depressive Disorder, Major/drug therapy , Female , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Retrospective Studies , Sex Factors
18.
J Neurol Neurosurg Psychiatry ; 78(11): 1182-7, 2007 Nov.
Article in English | MEDLINE | ID: mdl-17442759

ABSTRACT

BACKGROUND: Cognitive impairment plays a role in Parkinson's disease (PD) and has important consequences for patient management. However, many aspects of cognitive impairment in PD remain unclear because of the use of different and often invalid measurement instruments. In this study, a reliable and valid instrument, the SCales for Outcomes in PArkinson's disease-COGnition (SCOPA-COG), was used. AIM: To evaluate cognitive functioning in a large cohort of patients with Parkinson's disease and to assess the relations with demographic, disease related and clinical variables. METHODS: A cohort of 400 patients with PD was evaluated for cognition, motor and non-motor domains, as well as for demographic and disease related characteristics. Results were compared with 150 controls matched for overall age, sex and education distribution. RESULTS: Patients with PD scored significantly lower on all cognitive subdomains compared with controls, with the largest differences for executive functioning and memory. After correction for age and years of education, 22% of patients had impaired cognition, as measured by the total SCOPA-COG score, compared with controls. Across all patients, more severe cognitive impairment was associated with significantly more impairment in motor, autonomic, depressive and psychotic domains. Patients with the postural instability gait difficulty (PIGD) dominant phenotype showed more cognitive impairment compared with patients with the tremor dominant phenotype. Contrary to tremor scores, PIGD scores significantly worsened with increasing disease severity. CONCLUSIONS: Cognition is an important domain of the clinical spectrum of PD and poorer cognitive performance is associated with greater impairment in motor and non-motor domains in PD. The difference in cognitive scores between PIGD dominant patients and tremor dominant patients likely reflects more advanced disease.


Subject(s)
Cognition Disorders/diagnosis , Neuropsychological Tests/statistics & numerical data , Parkinson Disease/diagnosis , Aged , Cohort Studies , Dementia/diagnosis , Disease Progression , Female , Humans , Longitudinal Studies , Male , Middle Aged , Mobility Limitation , Neurologic Examination , Psychometrics/statistics & numerical data , Reference Values , Reproducibility of Results , Statistics as Topic
19.
Eur J Surg Oncol ; 43(7): 1288-1296, 2017 Jul.
Article in English | MEDLINE | ID: mdl-28258786

ABSTRACT

PURPOSE: As older women with breast cancer (BC) are underrepresented in trials, it is often unclear what represents the best treatment option for this patient group. To understand how oncologists approach the management of BC in older patients, we assessed their treatment recommendations. METHODS: In an online survey, 106 surgical, 37 radiation and 31 medical oncologists provided a treatment recommendation for hypothetical patients aged >70 years. Scenarios included loco-regional therapy with patient age varying at 76 and 84 years; systemic therapy with Karnofsky performance score varying at 90 and 50%; neo-adjuvant therapy; and adjuvant chemotherapy in triple-negative BC. RESULTS: Participants would less often recommend breast-conserving surgery plus radiotherapy for an 84 versus a 76-year-old patient (56% versus 73%, p = 0.001). They would more often accept omission of radiotherapy after breast-conserving surgery in older than in younger patients, if the patient wished to avoid this therapy (26% versus 4%, p < 0.001). All participants would propose systemic therapy for a high-recurrence risk patient with a good performance score, and 92% would still recommend therapy if the patient had a poor score (p < 0.001). Neo-adjuvant hormonal therapy followed by breast-conserving surgery for a large tumour was recommended by 27% of the participants. Adjuvant chemotherapy for an otherwise healthy woman with triple-negative BC was considered by 83% of the participants. CONCLUSIONS: Patient age and performance status influenced specialists' treatment recommendations. The observed recommendations for the treatment scenarios under investigation differ from older women's actual treatment. This discrepancy highlights the need for studies specifically targeting older patients.


Subject(s)
Breast Neoplasms/therapy , Medical Oncology , Practice Patterns, Physicians' , Radiation Oncology , Surgical Oncology , Adult , Age Factors , Aged , Aged, 80 and over , Antineoplastic Agents/therapeutic use , Breast Neoplasms/pathology , Combined Modality Therapy , Female , Humans , Karnofsky Performance Status , Male , Mastectomy, Segmental , Middle Aged , Radiotherapy , Surveys and Questionnaires , Tumor Burden
20.
J Clin Oncol ; 23(27): 6623-30, 2005 Sep 20.
Article in English | MEDLINE | ID: mdl-16170169

ABSTRACT

PURPOSE: Previous studies have shown that patients who have experienced adjuvant chemotherapy (experienced patients) have a more favorable attitude towards chemotherapy than those who have not (inexperienced patients). However, not much is known about the reasons underlying this difference. According to the Theory of Planned Behavior, the attitude towards a particular behavior (eg, accepting chemotherapy) is based on beliefs about the likelihood of outcomes of the behavior and the evaluations of these outcomes. We used this theory to explore in what way the beliefs of experienced patients differed from those of inexperienced patients. PATIENTS AND METHODS: A cross-sectional survey was undertaken among 719 patients who had been treated for early-stage breast cancer between 1998 and 2003. Patients were asked, first, to indicate the likelihood of six positive and six negative outcomes of undergoing chemotherapy and, second, to give their evaluation of these outcomes. RESULTS: Four hundred forty-six women filled in the questionnaire (response rate, 62%). As hypothesized, experienced patients (ie, patients who had been treated with adjuvant chemotherapy as part of their primary treatment plan) had a more positive attitude towards chemotherapy. Experienced patients provided higher likelihood estimates of treatment advantages, such as life prolongation. In addition, they evaluated the positive outcomes of chemotherapy more favorably. With regard to the negative outcomes of chemotherapy, few differences were observed between treatment groups. CONCLUSION: Experienced patients have more confidence in the positive outcomes of chemotherapy than inexperienced patients. This might be the result of a cognitive mechanism to justify the way in which patients were treated.


Subject(s)
Breast Neoplasms/drug therapy , Breast Neoplasms/psychology , Health Knowledge, Attitudes, Practice , Neoplasm Recurrence, Local/psychology , Quality of Life , Adaptation, Physiological , Adaptation, Psychological , Aged , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Breast Neoplasms/pathology , Breast Neoplasms/surgery , Chemotherapy, Adjuvant/psychology , Confidence Intervals , Cross-Sectional Studies , Female , Follow-Up Studies , Humans , Middle Aged , Neoplasm Recurrence, Local/drug therapy , Neoplasm Staging , Probability , Proportional Hazards Models , Sickness Impact Profile , Surveys and Questionnaires
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