Background
Women treated for gynecological cancer in the western world undergo a range of treatment modalities, most commonly surgery often in combination with adjuvant chemotherapy and/or radiotherapy. Gynecological cancer and its treatment can contribute to complex and interdependent consequences on women’s quality of life. In addition to physical symptoms, the psychological and spiritual burden of cancer has been well documented, including psychological distress, altered body images and personal relationships and coming to terms with one’s own mortality.1 However, troublesome symptoms related to pelvis, genital, and diagnosis-specific psychosexual needs distinguish women with gynecological cancer from other groups of patients with cancer. It is important when assessing quality of care for these women to take these unique issues into account.
As the women move into the survivorship phase, any nonadherence to care management of the disease and treatment may lead to persistent or new symptoms and distress. Since several modalities are used in the treatment of gynecological cancer, patients also go through several transitions between different specialist clinics during the periods of diagnosis, treatment, and rehabilitation, entailing waiting times and meetings with different kinds of health care personnel. Patient-reported outcome measures (PROMs) are key determinants in clinical trials and are increasingly being evaluated but need to be included in routine follow-up programs of gynecological cancer patients.2,3 However, despite the importance of understanding patients’ experiences, there is sparse research focusing on patients’ perceptions of the quality of their gynecological cancer care.
Patients’ preferences regarding health care can identify potential areas of care improvement.4,5 Therefore, in order to improve the quality of gynecological cancer care, documenting women’s perspectives of care is essential.6
PROMs capture patients’ health-related quality of life, while patient-reported experience measures (PREMs) capture patients’ experiences and perceptions of the quality of health care delivered (ie, the degree to which their needs are being met).7 There are few studies on PREMs of cancer patients, and no studies regarding gynecological cancer care were found. The theoretical PREM model of quality from the patient’s perspective (QPP) states that the quality of care depends on the structure of the care organization (ie, person-related, physical, and administrative environmental qualities) and the patients’ preferences, which include human and rational aspects.6
Based on the QPP model, an instrument was developed to assess the quality of care derived from patients’ perceptions of care.8–10 This instrument has 4 dimensions: the medical-technical competence of the caregivers, the degree of identity orientation in the attitudes and activities of the caregivers, the care organization’s physical-technical conditions, and the care organization’s sociocultural atmosphere.4 A short version of the QPP has been validated, frequently used and psychometrically tested in several care contexts,10 that is, advanced home care,11 lung cancer care,12 medical-surgical care,13 in vitro fertilization care,14 and palliative care.15 However, it has not yet been psychometrically evaluated for use in gynecological cancer care and does not address the specific symptoms and needs of patients with gynecological cancer. Therefore, the aim of this study was to adapt the QPP for use in gynecological cancer care and to describe patients’ perceptions of their quality of care in terms of the care received and the subjective importance (SI) of the aspects of care.
Methods and Design
This study was conducted using a population-based, cross-sectional design. The Strengthening the Reporting of Observational Studies in Epidemiology checklist for cross-sectional studies was used for the descriptive data.16
Data Collection
Patients included in the Swedish quality registry for gynecologic cancer were sampled from January 2017 to March 2018. Data were collected using a web-based survey sent 6–8 months after diagnosis at the conclusion of the treatment period. Inclusion criteria were: (1) a diagnosis of ovarian cancer, uterine cancer, cervical cancer, or vulva cancer and (2) treatment with surgery, chemotherapy, and/or radiotherapy in Sweden. The eligible participants received written information about the study, and written consent was implied by their answering the coded questionnaire or the web survey together with a ticked box. Reminders were sent once, 1 month later.
Instrument
The 4-dimensional QPP instrument short version was used, which is based on the theoretical model of the QPP.8–10 The QPP full version has been psychometrically validated using factor analysis,8 and further validated by a dimensional analysis using structural equation modeling.9 In 2001, the short version of the QPP was further developed and validated in patients (n = 162) receiving care at medical and surgical wards in Sweden.10 The patients responded to the original full version of QPP and to the short version of QPP. Correlations of acceptable size were found between the short form and the original QPP. The short form also had acceptable reliability coefficients. The strengths of the validation are that the items in the short version are derived from a patient perspective, that is, formulated in words used by patients, and the items have a theoretical foundation,8 which facilitates interpretation of results. The short version of QPP has been evaluated in a systematic review,6 where the content validity and reliability were found to be excellent, the construct validity good, and the criterion validity excellent.
In this study, the QPP short version10 was adapted to measure the quality of care specific to gynecological cancer care (QPP-GynCa) from the perspectives of patients with different gynecological cancers in diverse treatment settings. Modifications of the items from the QPP and the development of new items were based on symptoms included in The European Organization for Research and Treatment of Cancer Quality of Life questionnaires (EORTC QLQ C30) diagnosis-specific modules for gynecological cancers,17 and the research team’s expert knowledge in the field derived from clinical experience in gynecological cancer care and conducting research within the field.
The process for the adaptation of the QPP-GynCa is presented in the Results section. The QPP instrument comprises 4 dimensions of quality: medical-technical competence of the caregiver (MT), physical-technical conditions of the care organization (PT), identity-orientation approach (ID), and the sociocultural atmosphere (SC) representing the quality of care.8 Each item of the QPP-GynCa was answered in 2 ways: how the patients perceived the quality of care (perceived reality [PR] scale) and how they perceived the importance of each aspect of care (subjective importance [SI] scale). A 4-point Likert type scale, ranging from 1 (do not agree at all) to 4 (fully agree), was used for the PR scale, and the SI scale ranged from 1 (of little or no importance) to 4 (of very high importance). A “not applicable” response was available for both scales. Identity-oriented questions regarding health care personnel indicated that patient respect and empathy (3 items) were applicable at diagnosis, in surgery, during chemotherapy, and during radiotherapy. In this study, only the item at diagnosis was included to get a valid QPP instrument for all women diagnosed with gynecological cancer. In addition, the instrument includes 8 items regarding experiences of treatment, care and waiting time within the different contexts (Table 1) and 5 items regarding self-reported waiting time (Table 2). Thereto, 3 open-ended items related to each context complete the instrument (not presented).
Table 1. -
Experiences of Treatment, Care and Waiting Time During the Trajectory of Care (n = 1511)
| Items |
N |
Very Easy-Easy, n (%) |
Neither Easy Nor Difficult, n (%) |
Difficult-Very Difficult, n (%) |
| Experiences of treatment and care during: |
| Surgery |
1421 |
255 (18) |
569 (40) |
597 (42) |
| Chemotherapy |
792 |
99 (12) |
245 (31) |
448 (57) |
| Radiotherapy |
250 |
59 (24) |
77 (31) |
114 (45) |
| Experiences of waiting time to: |
| First visit at hospital |
1454 |
203 (14) |
648 (45) |
603 (41) |
| Diagnosis |
1460 |
140 (10) |
610 (42) |
710 (48) |
| Surgery |
1414 |
143 (10) |
615 (43) |
656 (47) |
| Chemotherapy |
785 |
79 (10) |
426 (54) |
280 (36) |
| Radiotherapy |
253 |
34 (13) |
146 (58) |
73 (29) |
Responses to items about experiences range from easy (1) to very difficult (5) and not relevant (6). The response options 1–2 and 4–5 are presented in pairs.
Table 2. -
Self-Reported Waiting Time During the Trajectory of Care (n = 1511)
| Items |
N |
≤ 1 mo, n (%) |
1–3 mo, n (%) |
≥ 3 mo, n (%) |
| Waiting time to: |
| First visit at hospital |
1450 |
1107 (76) |
281 (20) |
62 (4) |
| Diagnosis |
1455 |
1141 (78) |
258 (18) |
56 (4) |
| Surgery |
1413 |
888 (63) |
483 (34) |
42 (3) |
| Chemotherapy |
776 |
485 (62) |
276 (36) |
15 (2) |
| Radiotherapy |
245 |
127 (52) |
99 (40) |
19 (8) |
Response options for items about time: 0–7 d (1), 1 wk to 1 mo (2), 1–3 mo (3), 3–6 mo (4), more than 6 mo (5). The response options 1–2 and 4–5 are presented in pairs.
Statistical Analysis
Data were analyzed using International Business Machines Corporation Statistical Product and Service Solutions statistics version 26. Descriptive statistics were used to examine patients’ characteristics and patients’ perceptions of their care. Independent t tests were used to investigate patients’ perceptions of care in terms of differences in SI and PR. To avoid type 1 errors, the statistical significance level for all the analyses was reduced to P < .01.18
An exploratory factor analysis (EFA) using principal component analysis (PCA), including data from 1431 patients, was chosen for exploration of the underlying structure of the items,19 since the QPP instrument was modified for use in a new context with no assumption about the dimensionality of a set of items. Before PCA, the data’s suitability for EFA was assessed using Bartlett’s test of sphericity and the Kaiser-Meyer-Olkin (KMO) test. The Kaiser’s criterion was used to determine the number of factors to extract, and factors with an eigenvalue of ≥ 1.0 were kept for further analysis. A varimax rotation method with Kaiser normalization were used to extract these factors. Items loading at ≥ 0.4 were considered as acceptable,20 and the items were included in the factor for which they loaded the highest. Labeling of the factors was based on content. Nine items were not included in the PCA but were retained in the final solution based on the content of the QPP and areas of importance for women diagnosed and treated for gynecological cancer. Cases were excluded pairwise (n range, 683–1431). The internal consistency of the final QPP-GynCa (27 items) factors and dimensions was calculated using Cronbach’s alpha coefficient,18 and values > .7 were regarded as desirable.
Results
Patients
The questionnaire was sent to 3000 patients with diagnoses of gynecological cancer, and the response rate was 50.4% (n = 1511) (Table 3).
Table 3. -
Characteristics of Respondents
| Patient Characteristics |
Respondents, N = 1511, n (%) |
| Age at survey, ya |
| Mean ± 1 SD |
64.2 (13.7) |
| Range (minimum–maximum) |
19–95 |
| Diagnosis, n |
1475 |
| Ovarian cancer |
481 (33) |
| Uterine cancer |
665 (45) |
| Cervical cancer |
219 (15) |
| Vulvar cancer |
50 (3) |
| Otherb |
60 (4) |
| Not stated |
36 |
| Treatment modalityc |
| Surgery |
669 |
| Surgery and chemotherapy |
561 |
| Surgery and radiotherapy |
31 |
| Surgery, chemotherapy, and radiotherapy |
160 |
| Chemotherapy |
71 |
| Radiotherapy |
59 |
All characteristics are self-reported.
aAt the time the questionnaire was completed.
bWhen unsure, the women had the opportunity to mark “other.”
cTreatment modality is based on patients’ responses to items regarding experiences of respective periods of treatment (see
Table 1). Patients could respond regarding experiences of more than 1 treatment period.
Construct Validity of the QPP for Gynecological Cancer Care
The adaption of the QPP-GynCa (27 items) was performed stepwise. The first step was the selection and modification of existing QPP items in the short version (14 items)6 relevant to gynecological cancer care. In line with EORTC QLQ C3017 diagnosis-specific modules, 9 items were developed about specific gynecological cancer symptoms, self-care, and sexuality. In addition, 3 items were developed about need of information and support together with 1 global single item related to the competence and skills of health care professionals. The items concerning respect and empathy were initially constructed for different parts of the trajectory of care; at time of diagnosis and during surgery and/or chemotherapy and/or radiotherapy. In the final 27 item version, only the items related to the time for diagnosis were used.
Construct validity was measured by EFA using PCA including 18 items (Table 4). As Bartlett’s test of sphericity was significant (P < .001), data were considered suitable for PCA. The KMO value was 0.858, indicating that the sample should produce reliable and distinct factors.18 The Kaiser’s criterion indicated that the instrument consisted of 5 factors.
Table 4. -
Rotation Matrix for The 5-Factor Structure of The 18-Item QPP-GynCa
| Items/Factors |
Symptom Relief |
General Information and Participation |
Information Related to Self-care |
Respect and Empathy |
Information Related to Aspects of Sexuality |
| During my cancer treatment, I had good opportunity to participate in decisions that applied to my individual care plan |
|
.665 |
|
|
|
| During my cancer treatment, I received helpful information about: |
| Planning of the continued treatment and care |
|
.779 |
|
|
|
| How examinations and treatments would take place |
|
.798 |
|
|
|
| Results of examinations and treatments |
|
.801 |
|
|
|
| During my cancer treatment, I received helpful information about: |
| Self-care: “how I should best manage my health” |
|
|
.349 |
|
|
| Urinary problems |
|
|
.848 |
|
|
| Bloated abdomen and difficulty in controlling the bowels |
|
|
.844 |
|
|
| Genital discomfort (eg, irritation or soreness and bleeding) |
|
|
.832 |
|
|
| How cancer and its treatment could affect my sexual function |
|
|
|
|
.926 |
| How my sexual function could be preserved |
|
|
|
|
.930 |
| Who I could contact at the hospital if I had any questions |
|
.394 |
|
|
|
| During my cancer treatment, I received the best possible help for (when needed): |
| Troublesome symptoms |
.818 |
|
|
|
|
| Pain |
.826 |
|
|
|
|
| Lack of sleep |
.792 |
|
|
|
|
| Anxiety (feeling nervous) |
.713 |
|
|
|
|
| The health care personnel I met at the time of my cancer diagnosis: |
| Seemed to understand how I experienced my situation |
|
|
|
.840 |
|
| Treated me with respect |
|
|
|
.881 |
|
| Showed commitment: “cared about me” |
|
|
|
.885 |
|
Extraction method: principal component analysis. Rotation method: varimax with Kaiser normalization. Rotation converged in 6 iterations. Kaiser criterion: eigenvalue ≥ 1. Pairwise missing (n range: 683–1431).
Total explained variance in percentage: 73.1% (5 factors).
Abbreviation: QPP-GynCa, Quality From the Patient’s Perspective Instrument Adapted for Gynecological Cancer Care.
The final PCA revealed 5 factors with eigenvalues of ≥ 1 based on 18 items, which explained 73.08% of the total variance. Extracted factors with eigenvalues of ≥ 1 for the SI scale at item and factor levels are shown in Table 4. The factor solution was supported by the varimax rotation matrix and revealed a number of strong loaded items in each factor. The 2 items information on self-care “how I should best manage my health” and “who to contact if any questions” loaded just below 0.4. These were included in respective factor in accordance to the theoretical model QPP.
Reliability
Cronbach’s alpha was used to test internal consistency (Table 5). Cronbach’s alpha for the QPP-GynCa was > .7 for the MT (PR: 0.82, SI: 0.87) and ID (PR: 0.92, SI: 0.90) dimensions and all factors (PR: 0.82–0.91, SI: 0.80–0.97). Cronbach’s alpha was < .7 for the PT (PR: 0.41, SI: 0.63) and SC (PR: 0.65, SI: 0.51) dimensions.
Table 5. -
Internal Consistency (Cronbach’s Alpha) of the QPP-GynCa Including Dimensions, Factors, Items, and Single Items
| Dimensions/Factors/Items |
Cronbach’s α* |
| Perceived Reality |
Subjective Importance |
| Medical-Technical Competence (4 items and 1 single item) |
.82 |
.86 |
|
Symptom relief
|
.82 |
.87 |
| During my cancer treatment, I received the best possible help for (when needed): |
| Troublesome symptoms |
|
|
| Pain |
|
|
| Lack of sleep |
|
|
| Anxiety (feeling nervous) |
|
|
| During my cancer treatment, I received the best possible medical treatment and care (single item) |
|
|
| Physical-Technical Conditions (2 single items) |
.41 |
.63 |
| During my cancer treatment, I received examinations and treatment within acceptable wait times (single item) |
|
|
| During my visits to the hospital, I had access to necessary equipment (single item) |
|
|
| Identity-Oriented Approach (14 items and 2 single items) |
.92 |
.90 |
|
General information and participation during cancer treatment (5 items) |
.84 |
.80 |
| I received helpful information about: |
|
|
| Planning of continued treatment and care |
|
|
| How examinations and treatments would take place |
|
|
| Results of examinations and treatments |
|
|
| Who I could contact at the hospital if I had any questions |
|
|
| During my cancer treatment, I had good opportunity to participate in decisions that applied to my individual care plan |
|
|
|
Information related to self-care (4 items and 1 single item) |
.89 |
.89 |
| During my cancer treatment, I received helpful information about: |
|
|
| Self-care: “how I should best manage my health” (eg, diet and exercise) |
|
|
| Urinary problems |
|
|
| Bloated abdomen and difficulty controlling the bowels |
|
|
| Genital discomfort (eg, irritation or soreness and bleeding) |
|
|
| My medications, so I understood their effects and how to take them (single item) |
|
|
|
Information related to aspects of sexuality (2 items and 1 single item) |
.91 |
.97 |
| During my cancer treatment, I received helpful information about: |
|
|
| How cancer and its treatment could affect my sexual function |
|
|
| How my sexual function could be preserved |
|
|
| How cancer and its treatment affect fertility (single item) |
|
|
|
Respect and empathy (3 items) |
.90 |
.91 |
| The health care personnel I met at the time of my cancer diagnosis: |
|
|
| Seemed to understand how I experienced my situation |
|
|
| Treated me with respect |
|
|
| Showed commitment: “cared about me” |
|
|
| Socio-Cultural Atmosphere (3 single items) |
.65 |
.51 |
| During my cancer treatment, my care was guided by my needs rather than by routines (single item) |
|
|
| I was given the opportunity to speak to HCP undisturbed when I wanted (single item) |
|
|
| My relatives were treated with respect (single item) |
|
|
Abbreviations: HCP, health care professionals; QPP-GynCa, Quality From the Patient’s Perspective Instrument Adapted for Gynecological Cancer Care.
*Cronbach’s alpha, at dimensional and factor levels. For dimensional levels, single items are included in the value. Values > .7 were regarded as desirable.
Patients’ Perceptions of the Quality of Gynecological Cancer Care
The mean values and SD for the QPP-GynCa dimensions, along with factors, items, and single items, are presented in Table 6. The highest levels of SI and PR were reported for the PT dimension and for the respect and empathy factor (ID) as well as the items “treated me with respect” (ID, respect and empathy factor), “I received the best possible medical treatment and care” (MT, single item), and “the staff had the competence and skills necessary for my care” (single item), The lowest levels of SI and PR were reported for the ID dimension, the information related to aspects of sexuality factor, and the items related to sexuality and symptom management.
Table 6. -
Comparison of Patients’ Perceptions of Subjective Importance and Care Received, by Dimensions, Factors, Items, and Single Items (n = 1511)
| Dimensions/Factors/Items/Single Items |
N |
PR, Mean ± SD |
SI, Mean ± SD |
P
|
| Medical-Technical Competence (4 items and 1 single item) |
1386 |
3.45 (.68) |
3.66 (.51) |
<.001 |
|
Symptom relief
|
|
3.36 (.78) |
3.59 (.57) |
|
| During my cancer treatment, I received the best possible help for (when needed): |
| Troublesome symptoms |
1021 |
3.50 (.77) |
3.67 (.58) |
<.001 |
| Pain |
1110 |
3.57 (.72) |
3.68 (.55) |
<.001 |
| Lack of sleep |
686 |
3.11 (1.06) |
3.47 (.76) |
<.001 |
| Anxiety (feeling nervous) |
683 |
2.84 (1.14) |
3.47 (.76) |
<.001 |
| During my cancer treatment, I received the best possible medical treatment and care (single item) |
1354 |
3.60 (.69) |
3.80 (.48) |
<.001 |
| Physical-Technical Conditions (2 single items) |
1370 |
3.61 (.57) |
3.72 (.49) |
<.001 |
| During my cancer treatment, I received examinations and treatment within acceptable wait times (single item) |
1320 |
3.51 (.78) |
3.76 (.50) |
<.001 |
| During my visit to the hospital, I had access to necessary equipment (single item) |
1351 |
3.74 (.52) |
3.69 (.46) |
.001 |
| Identity-Oriented Approach (14 items and 2 single items) |
1429 |
3.01 (.74) |
3.28 (.59) |
<.001 |
|
General information and participation during cancer treatment (5 items) |
1420 |
3.35 (.69) |
3.50 (.55) |
<.001 |
| I received helpful information about: |
| Planning of continued treatment and care |
1368 |
3.44 (.79) |
3.55 (.65) |
<.001 |
| How examinations and treatments would take place |
1356 |
3.55 (.75) |
3.59 (.63) |
<.001 |
| The results of examinations and treatments |
1340 |
3.37 (.83) |
3.66 (.58) |
<.001 |
| Who to contact at the hospital if I had any questions |
1224 |
3.36 (.91) |
3.53 (.73) |
<.001 |
| During my cancer treatment, I had good opportunities to participate in decisions that applied to my individual care plan |
1245 |
3.02 (1.01) |
3.25 (.88) |
<.001 |
|
Information related to self-care (4 items and 1 single item) |
1355 |
2.80 (.93) |
3.20 (.77) |
<.001 |
| During my cancer treatment, I received helpful information about: |
| Self-care: “how I should best manage my health” (eg, diet and exercise) |
1218 |
2.86 (1.08) |
3.19 (.90) |
<.001 |
| Urinary problems |
1039 |
2.52 (1.17) |
3.08 (.95) |
<.001 |
| Bloated abdomen and difficulty in controlling the bowels |
1055 |
2.58 (1.15) |
3.17 (.91) |
<.001 |
| Genital discomfort (eg, irritation or soreness and bleeding) |
1063 |
2.61 (1.12) |
3.14 (.92) |
<.001 |
| My medications, so I understood their effects and how to take them (single item) |
995 |
3.33 (.86) |
3.54 (.69) |
<.001 |
|
Information related to aspects of sexuality (2 items and 1 single item) |
907 |
2.25 (1.11) |
2.75 (1.08) |
<.001 |
| During my cancer treatment, I received helpful information about: |
| How cancer and its treatment could affect my sexual function |
869 |
2.26 (1.16) |
2.80 (1.11) |
<.001 |
| How my sexual function could be preserved |
806 |
2.09 (1.27) |
2.78 (1.26) |
<.001 |
| How cancer and its treatment affect fertility (single item) |
359 |
2.69 (1.27) |
2.71 (1.26) |
.703 |
|
Respect and empathy (3 items) |
1449 |
3.59 (.67) |
3.75 (.47) |
<.001 |
| The health care personnel I met at the time of my cancer diagnosis: |
| Seemed to understand how I experienced my situation |
1431 |
3.50 (.79) |
3.71 (.55) |
<.001 |
| Treated me with respect |
1430 |
3.71 (.63) |
3.78 (.47) |
<.001 |
| Showed commitment: “cared about me” |
1428 |
3.59 (.75) |
3.76 (.50) |
<.001 |
| Socio-Cultural Atmosphere (3 single items) |
1384 |
3.31 (.75) |
3.45 (.62) |
<.001 |
| During my cancer treatment, my care was guided by my needs rather than by routines (single item) |
1247 |
3.04 (.97) |
3.29 (.85) |
<.001 |
| I was given the opportunity to speak to HCP undisturbed when I wanted (single item) |
863 |
3.29 (.97) |
3.55 (.71) |
<.001 |
| My relatives were treated with respect (single item) |
1100 |
3.67 (.67) |
3.69 (.57) |
.404 |
| Global single item related to HCP person-related qualities |
| During my time at the hospital, the HCP I met had the competence and skills necessary for my care (as far as I could tell) (global single item) |
1121 |
3.64 (.63) |
3.79 (.58) |
<.001 |
P values refer to differences in paired sample t tests. Statistical significance was at P ≤ .01.
Abbreviations: HCP, health care professionals; PR, perceived reality; SI, subjective importance.
Comparison, by Dimensions, Factors, and Single Items, of Patients’ Perceptions of Subjective Importance and Care Received
Compared with PR scales, SI scales were significantly higher in all dimensions, factors, and items, except for the “my relatives are treated with respect” item in the SC dimension and the “how cancer and its treatment affect fertility” item in the information related to aspects of sexuality factor and the ID dimension (Table 6).
Experiences of Waiting Times and Care Received
The waiting time before diagnosis was described as difficult to very difficult by 48.5% (n = 710) (Table 1). The majority had a waiting time of less than 1 month (n = 1141, 78.5%) (Table 2). The waiting time before treatment was described by the patients as difficult to very difficult for surgery (46.5%, n = 653), chemotherapy (36%, n = 280), and radiotherapy (29%, n = 73) (Table 1). The majority had a waiting time of less than 1 month (surgery: n = 888, 63%; chemotherapy: n = 485, 62.5%; and radiotherapy: n = 127, 52%) (Table 2).
Approximately half of the patients experienced the period of care as difficult to very difficult (surgery: n = 597, 42%; chemotherapy: n = 448, 56.5%; and radiotherapy: n = 114, 45.5%) (Table 1).
Discussion
Study results showed that the QPP-GynCa is a valid and reliable instrument to measure the quality of care perceived by gynecological cancer patients. The items in the QPP-GynCa reflect all 4 dimensions of the theoretical model of quality of care from patients’ perspectives on which the QPP is based. Scores indicate areas for improvement are information related to self-care and aspects of sexuality, and waiting times for treatment.
The EFA resulted in the QPP-GynCa with a 5-factor structure, explaining 73.08% of the total scale variance. The final psychometrically tested version of the QPP-GynCa consists of 18 items with 8 additional single items and 1 global single item, resulting in a 27-item version. The EFA was computed as a PCA since the QPP-GynCa was adapted for use in a new context. After excluding items loading at < .4 (except for the “how I should best manage my health” and “who to contact at the hospital if I had any questions” items), the results showed that the factor structure for the subscales were consistent with the factor structure of MT and ID of the QPP.9 To cover the factor structure of PT and SC of the QPP-GynCa, 8 single items and 1 global single item were added.
The Cronbach’s alpha values for the QPP-GynCa were > .80 for most of the dimensions on both the PR and the SI scales, indicating good internal consistency.18 This is consistent with the results from other studies that used the QPP in various contexts.15,21 However, the PT and SC dimensions had values of < .70. The alpha values are sensitive to the numbers of items, and low values can often be explained, in part, by low numbers of items.18 This, along with the moderate to good internal consistency of all factors, indicates that the QPP-GynCa is a psychometrically sound instrument, consistent with the results from earlier studies with the QPP.20
Each item of the QPP-GynCa was answered in 2 ways: how the patients perceived the quality of care (PR) and how they perceived the importance of each aspect of care (SI). Compared with PR, SI was significantly higher for all dimensions and factors indicating that patients experienced the care as not as high as they may have wished for (areas for improvement). However, these statically significant differences must be take into consideration in relation to the large sample, that is, small differences in means values are not always clinically relevant. On the item level, 25 out of 27 SI scores were also significantly higher than PR scores, except for the “how cancer and its treatment can affect fertility” (ID) and “my relatives are treated with respect” (SC) items, for which no differences were found. The lowest scores, indicating areas for improvement, were found in information related to self-care and information related to aspects of sexuality.
The results show that patients’ experiences of waiting were either difficult or very difficult, and because of this, patient waiting times need to be shortened. More than one third of the patients experienced the wait for surgery and chemotherapy or radiotherapy as difficult or very difficult, and more than 1 out of 3 or more of the patients had to wait more than 1 month before treatment was initiated. Standardized cancer patient pathways (CPPs) have been introduced in Denmark, Norway, and Sweden as a means to shorten the diagnostic interval and time-to-treatment for cancer patients.22 Recent statistical evaluation has unfortunately not indicated that patients with gynecological cancer referred to CPPs by their general practitioner get shorter diagnostic intervals.23 Efforts to shorten waiting times must therefore continue to be made.
Information about sexuality and the risk of sexual dysfunction for women who receive chemotherapy should be given early in the rehabilitation process,24 since research has shown that it is possible to improve sexual function, using behavioral interventions, after cancer treatment in women.25 However, the challenge for health care professionals is identifying the patients who want information and support on sexuality and self-care. It is important to recognize the diversity and complexity of the patients’ problems, including their unmet needs, in order to support them on a timely basis. In order to give adequate support based on patients’ wishes and needs, the team members with proper expertise should give person-centered information and care.25,26
Strengths and Limitations
This is the first published report on patients’ perceptions of the quality of gynecological cancer care and its SI. Strengths with this study are the large population-based cohort and the distribution of patients’ diagnoses that is representative for the Swedish population.27 The questionnaires were answered in private, which eliminated interviewer-induced bias. The response rate of 50 percent was acceptable and sufficient for the development of the proposed QPP-GynCa model. We do not know the reasons for nonparticipation or if nonparticipating women would have answered differently. In the future, the questionnaire should be translated to the most common foreign languages in Sweden, so even non-Swedish-speaking patients may participate. The response rate of 50% was considered adequate in light of the frequency of response rates below 50% and recent trends suggesting that it has become increasingly difficult to achieve high or even acceptable participation rates in surveys.28 The respondents came from different types of health care service regions, which led to few answers from some hospitals and caregivers, but a high number of more than 680 responses in each analyzed item (except fertility) produces generalizability and strengthens the model for gynecological cancer patients. Despite the response rate, there was a satisfactory amount of data to carry out an EFA because the least number of observations was 5 times the number of items analyzed.20 In the cancer rehabilitation process, there is no specified timeframe for the assessment of health care experiences. The questionnaires were sent at 6–8 months after diagnosis in order to facilitate the evaluation of the whole gynecological cancer process including adjuvant chemotherapy and radiotherapy treatment. In the future, continuous follow-ups at 1–3 months post-treatment or other times during cancer treatment and cancer rehabilitation would be preferable. This web-based patient input dataset has demonstrated both the feasibility and utility of this approach in health care assessment and addresses several of the unmet needs in health care experience evaluation. An expanded assessment in routine health care is planned.
We also need to keep in mind that a qualitative method is an appropriate method to obtain patients’ opinions regarding their perceptions of quality of health care, as it is subjective and may be affected by many factors.29 However, when focus is development of quality of health care, generalized knowledge is needed. The 2-dimensional instrument used in this study was developed from interviews with patients using a grounded theory approach.8 By focusing on the relationship between SI and PR, the QPP-GynCa reflects how the patient wants the care to be, which is a most important marker when assessing quality of health care as perceived by the actual care recipient.
Conclusions
The 5-factor QPP-GynCa is a valid and reliable instrument measuring quality of care from gynecological cancer patients’ perspectives and explains 73.1% of the total scale variance. The final QPP-GynCa 27-item version reflects all 4 dimensions of the theoretical model on which the QPP is based. This study contributes to a better understanding of the quality of care during the trajectory of gynecological cancer treatment and care. Areas for improvement noted are information related to self-care and information related to aspects of sexuality, and waiting times for treatment. This validation of the QPP-GynCa questionnaire provides a platform for future research into patients’ experiences of gynecological cancer treatment. We hope that the QPP-GynCa questionnaire will be used for studies of each of the 4 gynecological cancer types and their treatment periods, analyzing specific experiences in women to evaluate and improve shortcomings in cancer care treatment.
Acknowledgments
We would like to thank all of the patients who participated in the study. We also thank Jari Appelgren (licentiate statistician) for statistical advice as well as Christian Staf, statistician at Regional Cancer Centre West, Gothenburg for facilitating contact with ImproveIT Digital Solutions AB, Halmstad, the company that managed the questionnaires given to the patients. We also thank the Swedish quality Registry for Gynecologic Cancer (SQRGC) as well as the Swedish Association of Local Authorities and Regions (SKR), which financially supports the SQRGC. This work was also supported by grants from the Swedish Cancer Society and the regional funds in the Skåne region.
Author Contributions
All authors contributed to the study conception and design. Data preparation of the instrument Quality From the Patient’s Perspective Instrument Adapted for Gynecological Cancer Care (QPP-GynCa) to Drs Olsson, Wilde Larsson, and Borgfeldt, and data analysis were performed by Drs Olsson, Wilde Larsson, Larsson, and Borgfeldt. The first draft of the article was written by Drs Olsson, Larsson, and Borgfeldt, and all authors commented on previous versions of the article. All authors read and approved the final article.
Financial Disclosure
The authors have no funding or conflicts of interest to disclose.
Availability of Data and Material
All data and the material are available at the Regional Cancer Center West, where the Swedish Quality Registry for Gynecologic Cancer (SQRGC) is administrated and located.
Ethical Approval
The regional ethical review board in Gothenburg (Dnr.193-14, Dnr.749-14, Dnr.814-15, Dnr.1100-16, and Dnr.T947-17) approved the study.
Consent to Participate
All participants obtained written information about the study and were informed that they could withdraw from the study at any time without giving any explanations and without any consequences on their treatment and care.
Consent for Publication
All authors have given consent for publication.
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