| Literature DB >> 34766557 |
Andrea Ciavattini1, Giovanni Delli Carpini1, Luca Giannella1, Anna Del Fabro2, Vivek Banerji3, Genevieve Hall3, Maggiorino Barbero4, Francesco Sopracordevole2.
Abstract
ABSTRACT: This study aimed to evaluate the emotional path, impact on everyday life, and adequacy of patient education throughout the diagnostic and therapeutic journey of women who received a positive human papillomavirus (HPV) test or Pap smear result.An online survey was designed to determine the demographic characteristics, dominant feelings throughout the diagnostic and therapeutic procedures, major lifestyle changes, impact on social life, and perceived adequacy of patient information in Italian women with a positive HPV test or abnormal cervical cytology result. In this study, the phases of the "patient's journey" included the initial test, waiting for colposcopy or biopsy, waiting for surgery, and follow-up.Anxiety, worry, and fear were the most frequently cited emotions during the initial tests and intervals between procedures. Anxiety and fear gradually decreased during the journey until surgery, and higher levels of optimism were observed postsurgery. The most frequently reported lifestyle changes were attempts to boost the immune system, increased precautions in sexual practices, and dietary changes. Social life is affected by changes in sexual and intimate relationships with partners. Women reported receiving insufficient patient education on the diagnosis and its implications, progression, management, personal care, and resolution.Significant attention should be given to the psychosocial aspects of the entire patient journey after receiving a positive HPV test or an abnormal Pap smear result. It is essential to establish a good rapport between patients and healthcare professionals, and to educate women regarding the condition by minimizing the gap between the perceived and desired adequacy of information.Entities:
Mesh:
Year: 2021 PMID: 34766557 PMCID: PMC8589238 DOI: 10.1097/MD.0000000000027177
Source DB: PubMed Journal: Medicine (Baltimore) ISSN: 0025-7974 Impact factor: 1.817
Demographic characteristics of participants.
| Characteristic | Study population (n = 1003) |
| Age | |
| 21–25 yrs | 80 (8) |
| 26–30 yrs | 112 (11) |
| 31–35 yrs | 158 (16) |
| 36–40 yrs | 234 (23) |
| 41–45 yrs | 166 (17) |
| 46–50 yrs | 143 (14) |
| 51–55 yrs | 76 (8) |
| 56–60 yrs | 27 (3) |
| 61–65 yrs | 7 (1) |
| Educational qualification | |
| Primary school | 72 (7) |
| Secondary school | 384 (38) |
| University | 381 (38) |
| Doctoral degree (PhD) | 68 (7) |
| Professional degree (MD, JD…) | 98 (10) |
| Job status | |
| Working full time | 734 (73) |
| Self employed | 98 (10) |
| Unemployed | 123 (12) |
| Student or in full time training | 39 (4) |
| Retired/semi-retired | 9 (1) |
| Relationship status | |
| Single | 201 (20) |
| Married | 584 (58) |
| In a relationship | 218 (22) |
| Frequency of sexual intercourse at the moment of initial test result | |
| Every day | 51 (5) |
| At least once in a week but not everyday | 526 (52) |
| Between once a week and once a month | 194 (19) |
| Less often | 232 (23) |
Figure 1Dominant feelings throughout the patient's journey.
Most dominant feeling throughout patient's journey according to demographic characteristics of participants.
| Characteristic | N | Patient's journey | |||
| Initial test | Colposcopy/biopsy | Surgery | Wait and see | ||
| Age | |||||
| 21–25 yrs | 80 | Anxiety (30%) | Anxiety (23%) | Anxiety (24%) | Hope (40%) |
| 26–30 yrs | 112 | Anxiety (41%) | Anxiety (35%) | Worry (41%) | Hope (26%) |
| 31–35 yrs | 158 | Fear (23%) | Anxiety (27%) | Anxiety (27%) | Calm (15%) |
| 36–40 yrs | 234 | Anxiety (21%) | Anxiety (38%) | Worry (30%) | Calm (22%) |
| 41–45 yrs | 166 | Anxiety (31%) | Anxiety (22%) | Anxiety (33%) | Calm (40%) |
| 46–50 yrs | 143 | Anxiety (31%) | Anxiety (30%) | Anxiety (30%) | Hope (22%) |
| 51–55 yrs | 76 | Anxiety (34%) | Anxiety (33%) | Anxiety (37%) | Hope (20%) |
| 56–60 yrs | 27 | Worry (26%) | Worry (34%) | Worry (50%) | Hope (45%) |
| 61–65 yrs | 7 | Worry (29%) | Worry (33%) | Anxiety (60%) | Calm (27%) |
|
| .01 | .04 | .03 | <.01 | |
| Educational qualification | |||||
| Primary school | 72 | Anxiety (32%) | Worry (36%) | Anxiety (42%) | Calm (24%) |
| Secondary school | 384 | Worry (24%) | Worry (42%) | Anxiety (31%) | Calm (3%) |
| University | 381 | Anxiety (25%) | Anxiety (28%) | Worry (30%) | Hope (24%) |
| Doctoral degree (PhD) | 68 | Anxiety (23%) | Anxiety (28%) | Worry (25%) | Calm (12%) |
| Professional degree (MD, JD…) | 98 | Fear (26%) | Anxiety (28%) | Anxiety (22%) | Calm (30%) |
|
| .71 | <.01 | .08 | <.01 | |
| Job status | |||||
| Working full time | 734 | Anxiety (23%) | Anxiety (29%) | Worry (25%) | Hope (22%) |
| Self employed | 98 | Anxiety (32%) | Anxiety (33%) | Anxiety (42%) | Hope (37%) |
| Unemployed | 123 | Anxiety (27%) | Worry (38%) | Worry (39%) | Calm (23%) |
| Student or in full time training | 39 | Anxiety (30%) | Worry (35%) | Anxiety (39%) | Calm (25%) |
| Retired/semi-retired | 9 | Anxiety (36%) | Anxiety (37%) | Worry (43%) | Hope (32%) |
|
| .28 | .30 | <.01 | <.01 | |
| Relationship status | |||||
| Single | 201 | Worry (20%) | Worry (43%) | Worry (30%) | Calm (25%) |
| Married | 584 | Anxiety (27%) | Anxiety (29%) | Anxiety (42%) | Calm (23%) |
| In a relationship | 218 | Anxiety (29%) | Worry (36%) | Anxiety (38%) | Hope (26%) |
|
| .08 | <.01 | <.01 | .61 | |
| Frequency of sexual intercourse at the moment of initial test result | |||||
| Every day | 51 | Anxiety (25%) | Anxiety (23%) | Anxiety (22%) | Hope (17%) |
| At least once in a week but not everyday | 526 | Anxiety (28%) | Anxiety (35%) | Anxiety (30%) | Calm (23%) |
| Between once a week and once a month | 194 | Anxiety (32%) | Anxiety (28%) | Anxiety (25%) | Hope (36%) |
| Less often | 232 | Anxiety (40%) | Worry (33%) | Worry (25%) | Calm (34%) |
|
| <.01 | .15 | .28 | <.01 | |
| First level test | |||||
| HPV positivity only | 570 | Anxiety (35%) | Anxiety (31%) | Anxiety (26%) | Hope (31%) |
| Abnormal pap smear only | 873 | Anxiety (32%) | Worry (35%) | Worry (23%) | Calm (30%) |
|
| .24 | .13 | .22 | .72 | |
Main lifestyle changes during the “patient's journey”.
| Lifestyle change | Since initial test | After the colposcopy/biopsy | After surgery | After receiving your results | Follow-up |
| Stopped having sex altogether | 7% | 8% | 11% | 9% | 3% |
| Stopped/cut down on smoking or drinking alcohol | 9% | 11% | 10% | 10% | 4% |
| Stopped/cut down on smoking | 13% | 13% | 12% | 11% | 7% |
| Stopped sharing towels/bedding with others | 14% | 11% | 15% | 14% | 6% |
| Stopped having as much sex | 15% | 13% | 14% | 14% | 8% |
| Notified my sexual partners | 15% | 15% | 13% | 16% | 8% |
| Changed my habits around the house to ensure that I do not pass the infection on | 13% | 15% | 13% | 15% | 10% |
| Changed towels/bedding more regularly | 16% | 13% | 13% | 16% | 10% |
| Increased my level of exercise | 16% | 14% | 18% | 13% | 10% |
| Made changes to my diet | 17% | 17% | 15% | 16% | 15% |
| Started taking more precautions in my sex life | 23% | 20% | 18% | 24% | 13% |
| Attempted to boost my immune system | 29% | 28% | 24% | 30% | 23% |
Impact on social life throughout the patient's journey.
| Aspect of social life | Since initial test | After the colposcopy/biopsy | After surgery | After receiving your results | Follow-up |
| Sexual relationships | 21% | 22% | 23% | 19% | 10% |
| Relationships with partners | 17% | 17% | 19% | 15% | 8% |
| Sleeping pattern or quality of sleep | 16% | 10% | 15% | 13% | 7% |
| Work | 11% | 10% | 13% | 9% | 6% |
| Hobbies | 12% | 10% | 13% | 9% | 5% |
| Relationships with family | 13% | 10% | 11% | 9% | 5% |
| Travels | 12% | 10% | 12% | 9% | 4% |
| Relationship with friends | 12% | 9% | 11% | 8% | 5% |
Perceived adequacy of information throughout the patient's journey.
| After initial test results | Following colposcopy/biopsy | Following surgery | ||||
| Information wanted | Information given | Information wanted | Information given | Information wanted | Information given | |
| Explanation of diagnosis | 38% | 31% | 28% | 28% | 18% | 24% |
| Reassurance about the condition and what it means for the woman | 36% | 22% | 24% | 19% | 25% | 20% |
| Information on further tests/procedures | 33% | 32% | 20% | 22% | 17% | 23% |
| Information on how the condition can progress | 29% | 21% | 24% | 18% | 20% | 16% |
| Information on a specific product that could help | 21% | 13% | 18% | 18% | 14% | 15% |
| Information on things that could be done to help | 29% | 16% | 20% | 15% | 14% | 15% |
| Information about changes that can/should be made to lifestyle | 19% | 13% | 16% | 13% | 15% | 15% |
| Information about the biology and physiology of the condition | 18% | 13% | 14% | 13% | 14% | 18% |
| Information about how the condition is acquired/caught | 17% | 17% | 13% | 13% | 15% | 13% |
| Explanation whether they were “cured” or not | NA | NA | 22% | 17% | 21% | 23% |
| Explanation whether they still had lesions or not | NA | NA | 18% | 20% | 17% | 20% |
| Explanation whether they still had HPV or not | NA | NA | 17% | 15% | 17% | 13% |