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  1. Article ; Online: Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

    Kalf, Rachel R J / Delnoij, Diana M J / Ryll, Bettina / Bouvy, Marcel L / Goettsch, Wim G

    Journal of medical Internet research

    2021  Volume 23, Issue 12, Page(s) e27497

    Abstract: Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the ... ...

    Abstract Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful.
    Objective: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.
    Methods: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached.
    Results: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones.
    Conclusions: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.
    MeSH term(s) Humans ; Melanoma ; Quality of Life ; Social Media ; United Kingdom
    Language English
    Publishing date 2021-12-07
    Publishing country Canada
    Document type Consensus Development Conference ; Journal Article ; Patient Education Handout ; Research Support, Non-U.S. Gov't
    ZDB-ID 2028830-X
    ISSN 1438-8871 ; 1439-4456
    ISSN (online) 1438-8871
    ISSN 1439-4456
    DOI 10.2196/27497
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Bridging health technology assessment and healthcare quality improvement using international consortium of health outcomes measurement standard sets.

    Kalf, Rachel R J / Zuidgeest, Marloes / Delnoij, Diana M J / Bouvy, Marcel L / Goettsch, Wim G

    International journal of technology assessment in health care

    2021  Volume 38, Issue 1, Page(s) e6

    Abstract: Objective: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the ... ...

    Abstract Objective: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the agreement in outcome measures used in oncology for healthcare quality improvement and HTAs, and how these align to the International Consortium for Health Outcomes Measurement (ICHOM) standard sets.
    Methods: We conducted a cross-sectional comparative analysis of ICHOM sets focusing on oncological indications and publicly available measures for healthcare quality and HTA reports published by the National Health Care Institute from the Netherlands and the National Institute for Health and Care Excellence from the United Kingdom.
    Results: All ICHOM sets and HTAs used overall survival, whereas quality improvement used different survival estimates. Different progression estimates for cancer were used in HTAs, ICHOM sets, and quality improvement. Data on health-related quality of life (HRQoL) was recommended in all ICHOM sets and all HTAs, but selectively for quality improvement. In HTAs, generic HRQoL questionnaires were preferred, whereas, in quality improvement and ICHOM sets, disease-specific questionnaires were recommended. Unfavorable outcomes were included in all HTAs and all ICHOM sets, but not always for quality improvement.
    Conclusions: Although HTA and quality improvement use outcome measures from the same domains, a greater level of alignment seems possible. ICHOM may provide input on standardized outcome measures to support this alignment. However, residual discrepancies will remain due to the different objectives of HTA and quality improvement.
    MeSH term(s) Technology Assessment, Biomedical ; Quality Improvement ; Cross-Sectional Studies ; Quality of Life ; Quality of Health Care ; Delivery of Health Care ; Outcome Assessment, Health Care
    Language English
    Publishing date 2021-12-21
    Publishing country England
    Document type Journal Article
    ZDB-ID 632573-7
    ISSN 1471-6348 ; 0266-4623
    ISSN (online) 1471-6348
    ISSN 0266-4623
    DOI 10.1017/S0266462321000520
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 2073: Show issues Location:
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  3. Article ; Online: Bridging the gap: Can International Consortium of Health Outcomes Measurement standard sets align outcomes accepted for regulatory and health technology assessment decision-making of oncology medicines.

    Kalf, Rachel R J / Vreman, Rick A / Delnoij, Diana M J / Bouvy, Marcel L / Goettsch, Wim G

    Pharmacology research & perspectives

    2021  Volume 9, Issue 2, Page(s) e00742

    Abstract: Standard outcome sets developed by the International Consortium for Health Outcomes Measurement (ICHOM) facilitate value-based health care in healthcare practice and have gained traction from regulators and Health Technology Assessment (HTA) agencies ... ...

    Abstract Standard outcome sets developed by the International Consortium for Health Outcomes Measurement (ICHOM) facilitate value-based health care in healthcare practice and have gained traction from regulators and Health Technology Assessment (HTA) agencies that regularly assess the value of new medicines. We aimed to assess the extent to which the outcomes used by regulators and HTA agencies are patient-relevant, by comparing these to ICHOM standard sets. We conducted a cross-sectional comparative analysis of ICHOM standard sets, and publicly available regulatory and HTA assessment guidelines. We focused on oncology due to many new medicines being developed, which are accompanied by substantial uncertainty regarding the relevance of these treatments for patients. A comparison of regulatory and HTA assessment guidelines, and ICHOM standard sets showed that both ICHOM and regulators stress the importance of disease-specific outcomes. On the other hand, HTA agencies have a stronger focus on generic outcomes in order to allow comparisons across disease areas. Overall, similar outcomes are relevant for market access, reimbursement, and in ICHOM standard sets. However, some differences are apparent, such as the acceptability of intermediate outcomes. These are recommended in ICHOM standard sets, but regulators are more likely to accept intermediate outcomes than HTA agencies. A greater level of alignment in outcomes accepted may enhance the efficiency of regulatory and HTA processes, and increase timely access to new medicines. ICHOM standard sets may help align these outcomes. However, some differences in outcomes used may remain due to the different purposes of regulatory and HTA decision-making.
    MeSH term(s) Antineoplastic Agents/therapeutic use ; Clinical Trials as Topic/standards ; Cross-Sectional Studies ; Decision Making, Organizational ; Drug Approval ; Humans ; Medical Oncology/standards ; Outcome Assessment, Health Care/standards ; Practice Guidelines as Topic ; Technology Assessment, Biomedical/standards ; Value-Based Purchasing/standards
    Chemical Substances Antineoplastic Agents
    Language English
    Publishing date 2021-04-09
    Publishing country United States
    Document type Comparative Study ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2740389-0
    ISSN 2052-1707 ; 2052-1707
    ISSN (online) 2052-1707
    ISSN 2052-1707
    DOI 10.1002/prp2.742
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.

    Makady, Amr / Kalf, Rachel R J / Ryll, Bettina / Spurrier, Gilliosa / de Boer, Anthonius / Hillege, Hans / Klungel, Olaf H / Goettsch, Wim

    Health and quality of life outcomes

    2018  Volume 16, Issue 1, Page(s) 222

    Abstract: Purpose: Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity ... ...

    Abstract Purpose: Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and melanoma-specific HRQoL questionnaires represent these perspectives.
    Methods: A survey was distributed on the social media channels of Melanoma Patient Network Europe to assess melanoma patients' perspectives regarding HRQoL. Two researchers independently conducted content analysis to identify key themes, which were subsequently compared to questions from one current cancer-specific and two melanoma-specific HRQoL questionnaires (i.e. EORTC QLQ-C30, EORTC QLQ-MEL38, FACT-M).
    Results: In total, 72 patients and 17 carers completed the survey. Patients indicated that family, having a normal life, and enjoying life were the three most important aspects of HRQoL for them. Carers indicated that being capable, having manageable adverse events, and being pain-free were the three most important aspects of HRQoL for patients. Respondents seem to find some questions from HRQoL questionnaires relevant (e.g. 'Have you felt able to carry on with things as normal?') and others less relevant (e.g. 'Have you had swelling near your melanoma site?'). Additionally, wording may differ between patients and HRQoL questionnaires, whereby patients generally use a more positive tone.
    Conclusions: Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences seem to emerge between patient and carer perspectives. Additionally, patient perspectives did not seem to fully correlate to questions posed in cancer- (i.e. EORTC QLQ-C30) and melanoma-specific (i.e. EORTC QLQ-MEL38, FACT-M) HRQoL questionnaires examined.
    MeSH term(s) Adolescent ; Adult ; Aged ; Caregivers/psychology ; Cross-Sectional Studies ; Europe ; Feasibility Studies ; Female ; Humans ; Male ; Melanoma/psychology ; Middle Aged ; Quality of Life ; Social Media ; Surveys and Questionnaires ; Young Adult
    Language English
    Publishing date 2018-11-29
    Publishing country England
    Document type Journal Article
    ISSN 1477-7525
    ISSN (online) 1477-7525
    DOI 10.1186/s12955-018-1047-z
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Predictive ability of direct-to-consumer pharmacogenetic testing: when is lack of evidence really lack of evidence?

    Kalf, Rachel R J / Bakker, Rachel / Janssens, A Cecile J W

    Pharmacogenomics

    2013  Volume 14, Issue 4, Page(s) 341–344

    MeSH term(s) Biomarkers, Pharmacological ; Genome, Human ; Humans ; Pharmacogenetics/statistics & numerical data ; Polymorphism, Single Nucleotide
    Chemical Substances Biomarkers, Pharmacological
    Language English
    Publishing date 2013-03
    Publishing country England
    Document type Editorial ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ZDB-ID 2019513-8
    ISSN 1744-8042 ; 1462-2416
    ISSN (online) 1744-8042
    ISSN 1462-2416
    DOI 10.2217/pgs.13.8
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 5247: Show issues Location:
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  6. Article ; Online: Variations in predicted risks in personal genome testing for common complex diseases.

    Kalf, Rachel R J / Mihaescu, Raluca / Kundu, Suman / de Knijff, Peter / Green, Robert C / Janssens, A Cecile J W

    Genetics in medicine : official journal of the American College of Medical Genetics

    2013  Volume 16, Issue 1, Page(s) 85–91

    Abstract: Purpose: The promise of personalized genomics for common complex diseases depends, in part, on the ability to predict genetic risks on the basis of single nucleotide polymorphisms. We examined and compared the methods of three companies (23andMe, ... ...

    Abstract Purpose: The promise of personalized genomics for common complex diseases depends, in part, on the ability to predict genetic risks on the basis of single nucleotide polymorphisms. We examined and compared the methods of three companies (23andMe, deCODEme, and Navigenics) that have offered direct-to-consumer personal genome testing.
    Methods: We simulated genotype data for 100,000 individuals on the basis of published genotype frequencies and predicted disease risks using the methods of the companies. Predictive ability for six diseases was assessed by the AUC.
    Results: AUC values differed among the diseases and among the companies. The highest values of the AUC were observed for age-related macular degeneration, celiac disease, and Crohn disease. The largest difference among the companies was found for celiac disease: the AUC was 0.73 for 23andMe and 0.82 for deCODEme. Predicted risks differed substantially among the companies as a result of differences in the sets of single nucleotide polymorphisms selected and the average population risks selected by the companies, and in the formulas used for the calculation of risks.
    Conclusion: Future efforts to design predictive models for the genomics of common complex diseases may benefit from understanding the strengths and limitations of the predictive algorithms designed by these early companies.
    MeSH term(s) Algorithms ; Atrial Fibrillation/diagnosis ; Atrial Fibrillation/genetics ; Celiac Disease/diagnosis ; Celiac Disease/genetics ; Crohn Disease/diagnosis ; Crohn Disease/genetics ; Diabetes Mellitus, Type 2/diagnosis ; Diabetes Mellitus, Type 2/genetics ; Genetic Predisposition to Disease ; Genetic Testing ; Genetic Variation ; Genome, Human ; Genotype ; Humans ; Macular Degeneration/diagnosis ; Macular Degeneration/genetics ; Male ; Personal Health Services ; Polymorphism, Single Nucleotide ; Prostatic Neoplasms/diagnosis ; Prostatic Neoplasms/genetics ; Risk Assessment ; Risk Factors
    Language English
    Publishing date 2013-06-27
    Publishing country United States
    Document type Comparative Study ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1038/gim.2013.80
    Database MEDical Literature Analysis and Retrieval System OnLINE

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