ABSTRACT
OBJECTIVE: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. METHODS: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. RESULTS: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). CONCLUSION: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.
Subject(s)
Caregivers/psychology , Communication , Decision Making , Hematologic Neoplasms/diagnosis , Patient Participation , Personal Satisfaction , Adaptation, Psychological , Adult , Female , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Humans , Male , Middle Aged , Patient Participation/psychology , Patient Preference , Patient Satisfaction , Physician-Patient Relations , Quality of Life , Referral and Consultation , Surveys and QuestionnairesABSTRACT
Human cathepsin K is a recently described cysteine protease with high sequence homology to cathepsins S and L, members of the papain superfamily of cysteine proteases. Cathepsin K is abundantly and selectively expressed in osteoclasts and may perform a specialized role in osteoclast-mediated bone resorption. In the present study, the genomic organization and chromosomal localization of human cathepsin K (HGMW-approved symbol CTSK) were determined. Intron-exon boundaries were identified by PCR on human genomic DNA, and subsequently a P1 genomic clone containing the full-length gene was isolated. Cathepsin K spans approximately 12.1 kb of genomic DNA and is composed of eight exons and seven introns. The genomic organization of cathepsin K is similar to that of cathepsins S and L. The gene was mapped to chromosome 1q21 by fluorescence in situ hybridization. Primer walking on the P1 genomic clone identified 1108 bp of 5' flanking sequence and 459 bp of 3' flanking sequence. Ribonuclease protection assay and 5' RACE indicated a single transcriptional start site 49 bp upstream of the initiator Met codon. Analysis of the 5' flanking region indicates that this gene lacks canonical TATA and CAAT boxes and contains multiple potential transcription regulatory sites. The characterization of the cathepsin K gene and its promoter may provide valuable insights not only into its osteoclast-selective expression, but also into the molecular mechanisms responsible for osteoclast activation.
